Dear Friends

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JANUARY 2006

DEAR FRIENDS,

Hope this finds you having enjoyed (if not recovered from) the holidays.  The new year promises many exciting events--here are just a few things happening. . .

In February, the Reuters will host their annual "Sweetheart Hot Air Balloon Rally" that is a tremendous fundraiser for us every year. It seems like it gets bigger and bigger with each passing year and everyone seems to have a fantastic time.

The New Jersey Cystinosis Foundation in March is hosting their annual fundraiser Dinner-Dance.  I think that they have been doing this for over 2 decades now and it is the most popular event in the area.    It is always a blowout!

The Discovery Channel (on cable TV) has "discovered" cystinosis!  The Discovery Channel has developed a series of stories on difficult-to-diagnose diseases.  The segment on cystinosis will feature Joey Jordan, son of Richard and Mary Jordan of northern California .  Dr. Sheldon Orloff from Kaiser Permemente is also featured.  We will alert you as soon as we know when the episode will be aired (hopefully in the spring). 

Due to the many years of outreach on the part of the Cystinosis Foundation, there are now many collaborations going on, and many events which we are proud to bring to our community.  The 4th International Cystinosis Conference will be held Noordwijkerhout, The Netherlands (located 30 kilometers from Amsterdam airport).  Mark this year's calendar from June 30th - July 2, 2006 for a special time of friendship and learning.  As usual, there will be a question and answer period, many helpful workshops, plus up-to-the-minute reports on research and progress. You won't want to miss Mack Maxwell demonstrating his wonderful exercises that keep him fit and positive! 

Also not to be forgotten is the 3rd annual Cystinosis Foundation , Mexico 's symposium to be held in Mexico City on Tuesday, January 24, 2006 .  The hotel accomodations have changed from the Sheraton to The Royal Pedregal Hotel.  Dr. Craig Langman will be the featured speaker, plus many other doctors from around Mexico and elsewhere.  Dr. Langman has supported this symposium since its beginning three years ago.  Our own Mack Maxwell will be honored there at a dinner in February (date and time to be announced).  For more information on the Mexico symposium contactVictor at: info@cystinosismexico.org

Susan and Serena Scott have announced the first Cystinosis conference in Australia this year!  She and Serena are being "hush-hush" on the details as they're not firmed up yet, but we wait with eager anticipation to hear more.  We will let you know via the newsletter and our website when things are firmed up. 

On a different note, many parents express frustration and concern over the seeming daily battles with their child in taking the required meds.  One mother found out that her child had been hiding the dosage for a while!  Mack wrote a very encouraging note to the mother, which is excerpted here: "Teen years are difficlut, even without cystinosis in the mix.  All I can tell you is that there is so much to look forward to. I'm currently 41 and in the best shape of my life! I'm also having the most fun in my life, too.  I recommend that you just do the best that you can, take your meds and look forward to the good things.  I wish you the best of luck." 

With best wishes for the new year,

Jean Hobbs-Hotz
President 

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APRIL 2005

Dear Friends:

California Stem Cell Research and Cures Initiative, (Proposition 71) passed by a solid 59% in California's last election.  It will provide $3 billion dollars in state financing for stem cell research.  It is expected to be distributed $350 million a year for 10 years to laboratories and scientists in California. An organization, California Institute for Regenerative Medicine, will be created to administer grants. It is expected that the 5 University of California campuses with medical schools (UC San Diego,  UCLA, UC Davis, UC Irvine, UC San Francisco) will take a leading role and will get to select one member for this organization.  Dr. Phillip Pizzo, dean of Stanford University Medical School, has been appointed to this organization by the State Controller, Steve Westly, who gets to make 5 appointments, as does Governor Arnold Schwartzenegger, Treasurer, Phil Angelides, and Lt. Governor, Cruz Bustamante. The Board members, in turn, will appoint two committees to approve grants.  April 22, 2005 is the date when the site search committee will announce the site for the Stem Cell Institute.  Finalist cities are: San Francisco, Sacramento and Emoryville.  The Independent Oversight Committee (the governing board of the Stem Cell Institute) will meet on May 6, 2005 for the final decision.

The second Cystinosis Foundation Family and Medical Reunion Conference in Mexico, was held at the Villa Florida Hotel in Cordoba, Vera Cruz on January 28-29, 2005.  The Organizing Committee
consisted of:  Leticia Belmont, Ph.D., Victor Gomez-Molina, Cystinosis Foundation Mexico founder, and Socorro Lopez-Gomez, Foundation member.  Speakers included Pablo Figueroaa of Genyme
Laboratories; Gerardo Mendoza-Valle of National Foundation of Transplants (Mexico); Maria Gonzalez an opthalmologist, Cystinosis Foundation, Mexico Medical Board; Alejardra Aguilar-Kitzu,
Nephrologist, Cystinosis Foundation, Mexico Medical Board, and Leticia Belomont, Ph.D., Cystinosis Foundation, Mexico Medical Board. Dr. Belmont and Victor Gomez-Molina will present an update of
Cystinosis in Mexico at the Regional Conference at UCSD, La Jolla, California, July 1 or 2, 2005.
Speaking of conferences, the La Jolla Regional Conference is coming up soon!  Our keynote speaker will be Dr. Corrine Antignac of Neker Hospital in Paris, France, as well as Dr. Jerry Schneider, Dr.
Doris Trauner, Dr. Ranjan Dohil, Dr. Paul Grimm, plus Mack Maxwell will be demonstrating his exercise routine!  This is a great opportunity for visiting and bonding with both friends and doctors.
Dr. Doris Trauner will be conducting her voluntary testing on psychometric testing and MRIs on children.  The good news is that all volunteers will be paid a stipend:  $25 for MRIs and $10 for
psychometric testing.  "Apartments" will be available to rent on campus at reasonable rates for families.  For more information contact Gloria Ramos at gramos@sbcglobal.net.

The Midwest conference will be happening from August 12-15 this year at the American Inn in Owatonna, Minnesota.  It will be a great opportunity to visit with old friends and make new ones. For
further information contact Dan and Holly Reuter at hreuter@myclearwave.net. 

It is with deep sadness that I report the death of Keith A. Croce, 38, of Maquoketa, Iowa on April 12, 2005.  Services were held at the Sacred Heart Catholic Church in Maquoketa on April 16.  Keith is survived by his parents, Billy and Darlis Croce; sister, Khristy (Mrs. Jay) Rollinger, brother, Bill Croce, his maternal grandmother, Luella Kilburg, and numerous relatives.  Keith graduated with
Associate Degrees from Clinton Community College and Scott Community College.  He also attended the University of Iowa.  Keith had a varied career.  He worked as a sportwriter for the Bellevue Herald
Leader and the TimberLanes, and at the Jaconson County Senior Center.  He was a member of the Sacred Heart Catholic Church in Maquoketa, the Bellevue Knights of Columbus Council #1354 and the Cystinosis Foundation.  Sports played a big part in Keith's life as he coached the Maquoketa Indians semi-pro baseball team for the past 11 years. His hobbies included bowling, following NASCAR racing and collecting sports memorabilia.  He will be sorely missed.


Please check the "Message Board" of our website this month for suggestions.  It is well worth looking at the website regularly for good comments and suggestions like this.  Of course, always consult your doctor before trying anything new.  Here's hoping you enjoy the lovely spring weather. Looking forward to seeing you at the San Diego conference!

With Best Wishes
Jean Hobbs Hotz,
President, Cystinosis Foundation

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January 2004

Dear Friends:

Happy new year to you all. I hope this coming year sees everyone in much better health and our progress towards a cure that much closer!

It is with great excitement that I write you today about the Third International Cystinosis Congress in Europe. This important event, which families, patients, physicians, and researchers from around the world look forward to attending, will be held in Tarragona, Spain (about an hour from Barcelona) on July 9, 10, 11, 2004.

Based on what was learned at Congresses in Bergamo, Italy and Paris France, families have started support groups in the Netherlands, Ireland, Mexico, and Australia. After attending a conference in Italy, François Couppey became active in AIRG France in order rrto promote cystinosis awareness. Today, Mr. Couppey sits on the Board of AIRG France!

New associations and friendships were forged in Italy and France. Parents learned of new coping mechanisms and discovered that they were not alone. They learned to work together, to support one another, and to raise funds to combat this chronic disease.

Families and patients are inspired when they meet with physicians and researchers working to find better treatments and eventually a cure. In a relaxed and friendly atmosphere, parents are able to gather critical information that helps them care for their children with special needs.

The Cystinosis Foundation has hosted 18 annual conference in the United States, two regional conferences, two symposiums, and two international Cystinosis congresses in Europe. The Congress in Paris, France (2002) was a collaboration with AIRG France, and the Congress in Spain will be a co-collaboration with AIRG France and Spain.

It is our desire that conferences will be available for all families and individuals with cystinosis, who desire to meet with others with the same concerns. Enclosed, you will note the "Conference Survey Questions" form. I can't stress how important it is that you complete this form timely. An un-stamped envelope (to help us save money) is enclosed for your speedy reply to Gloria Ramos, who has graciously offered to compile the results.

Shannon Paju is back in the hospital recovering from surgery. I'm sure she would love to hear from you! Cards and letters can be sent to: 1333 So. Latona Street, Anaheim, CA. 92804-4620.


Lastly, heartfelt thanks as usual, to Frank Ritchie and the marvelous, professional website he is so faithfully maintaining. We have added new topics under "Message Forum" so make sure you check it out! Thanks to those who have already participated and shared their experiences and insights.

"We included a Conference Questionaire at this point and will attempt to have a duplicate placed online with a link to it from here."


With Best Wishes
Jean Hobbs Hotz,
President, Cystinosis Foundation

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October 2003

Dear Friends:

It is with great excitement that I am writing to you today about the Third International Cystinosis Congress in Europe. This important event, which families, patients, physicians, and researchers from around the world are looking forward to attending, will take place in Tarragona, Spain,near Barcelona, July 9,10,11, 2004.
Based on what they learned at Congresses in Bergamo, Italy, and Paris, France, families have started support groups in the Netherlands, Ireland, Mexico, and Australia. After attending a Conference in Italy, Francois Couppey, became active in AIRG FRANCE, in order to promote cystinosis awareness. Today, Mr. Couppey sets on the Board of AIRG FRANCE.
New associations and friendships were forged in Italy and France. Parents were inspired and went forward with new coping mechanisms and the realization that they are not alone. They became inspired to work together, to support one another and to raise funds to combat this chronic disease. The Cystinosis Foundation, United Kingdom was founded by Jonathan Terry, prior to the European Congresses.
Families and patients are inspired when they meet with physicians and researchers working to find better treatments and eventually a cure. In a relaxed and friendly atmosphere parents are able to gather critical information that helps them care for their children with special needs.
The Cystinosis Foundtion has hosted 18 Annual Conferences in the United States, two regional conferences,two symposiums and two International Cystinosis Congresses in Europe. The Congress in Paris, France, 2002 was a collaboration with AIRG FRANCE, and the Congress in Spain will be a collaboration with AIRG FRANCE and AIRG SPAIN.
It is our desire that Conferences will be available for all families and individuals with cystinosis, who desire to meet with others with the same concerns . We will be sending a questionnaire to families and individuals to be returned to Gloria Ramos. After reviewing the questionnaires we will be better able to determine the sites for future Conferences and meetings.

Shannon Paju's friends will be happy to know she is home and her mother Bonnie says that she is getting stronger every day. Welcome home Shannon.

Thanks to Diane Dorman , Vice President Public Policy, NORD for updating us on the movement to eliminate the Medicare two-year waiting period for Americans with disabilities. Following are the facts from NORD and what you can do about it. We hope you can find time to act on this important issue.

FROM NORD

Know the Facts-

Approximately 6 million people or 15 percent of the Medicare population is under 65 years old and disabled-a number estimated to expand to 17 percent, or 7.6 million people, by 2010. (Commonwealth Fund and Kaiser Family Foundation 2002)

Death rates among SSDI recipients are highest during their first two years of enrollment. (Council on Medical Service, American Medical Association)

Eliminating the waiting period would add approximately $8.7 billion to Medicare spending. (Commonwealth Fund 2003)

The Medicaid program would save an estimated $4.3 billion given that approximately 49 percent of people in the waiting period have Medicaid. (Commonwealth 2003)

What you can do-

Share your story. If you or someone you know has a compelling story highlighting the need to change the 24-month waiting period, please contact Diane Dorman at ddorman@rarediseases.org.

Spread the word. Encourage your members to take action: write letters and make calls to legislators in Congress: write letters to the editor, and share your stories.

Diane E. Dorman, Vice President for Public Policy
National Organization for Rare Disorders, DC Office
1050 17th St., NW, Suite 600
Washington, D.C 20036
Phone: 202.496.1296 ext. 3014
Cell: 202.258.6457
Email: ddorman@rarediseases.org


With Best Wishes
Jean Hobbs Hotz,
President, Cystinosis Foundation

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July 2003

Dear Friends:

The San Francisco Chronicle's Sunday magazine section for June 1st on the cover page states in big, bold, letters:

LIFE SAVERS
    Heart: Dr. Vincent Gaudiani
    Head: Dr. Martin Holland
    Brain: Dr. Mitchel Berger
    Kidneys: Dr. Oscar Salvatierra, Jr
    Burns: Dr. David Kaufman
    Children: Dr. James Betts
    Preemies: Dr. Susan Sniderman

Dr. Oscar Salvatierra, Jr. who heads the kidney transplant team with Dr. Minnie Sarwal, has performed more than 2,000 transplants, including nearly 700 in children. In his long association with Stanford University, he has played a major role in the many medical advances that have saved children's lives--the most important from the Foundation's viewpoint is developing a protocol that allows pediatric kidney recipients to avoid lifelong steroid use.

Luke Stone, who underwent successful kidney transplantation, by Dr. Salvatierra, Jr. and is recuperating well. Best wishes from the cystinosis communtiy for a speedy recovery, Luke and Mike! If you would like to send them a get well card and fond good wishes, their address is:
    c/o Oakwood Corp. Housing,
    355 West Middlefield, #209,
    Mountainview, CA 94043.

Dr. Doris Trauner, neurologist, at UC San Diego, sends the following message to families who will attend the following cystinois conferece on August 15 &16. "We will be studying different aspects of attention in cystinosis children and adults. We invite everyone with cystinosis over 5 years of age to participate in this study." Please let them know if you are interested:
Call: (858) 587-4004 or Email: dtrauner@ucsd.edu.

Since I last wrote, we are please to announce the addition of two more Presenters: Dr. Al-Sabban, from Saudi Arabia who will be speaking on the international database and Dr. Don Cairns, who will be speaking on developing medication that is more efficient and with less side effects. Plus we have a bevy of world authorities speaking to us: Dr. Corinne Antignac, Necker-Enfants Malades Hospital, Paris France is the Keynote Speaker. Dr. Antignac has developed a mouse model with cystinosis. Dr. Minnie Sarwal, Stanford University, Stanford, California is on the Steroid-Free Transplant Team, that has pioneered Pediatric Steroid Free Transplantation in the United States. Dr. Jerry Schneider, Dean of Academic Studies, University of California, San Diego. La Jolla, California, has pioneered numerous studies in cystinosis which led to better understanding of the disease. Stephanie Cherqui, Scripps Research Institute, La Jolla, California, is working on Stem Cell Research for diabetes. She will share this vitally important reserch information. Dr. Doris Trauner, a neurologist at the University of California, San Diego discovered that some of the children with cystinosis learn differently. She will continue offering testing on a volunteer basis. Angela Ballantyne, Ph.d, is a member of Dr. Trauner's cystinosis research group, and she will report on some of the results of testing. times. The list goes on, as the Committee Belinda Broughton, Merle Mund, Jane Lemar, Stephanie Gillenberg, Laura Reeves, Gloria Ramos, Bonnie Paju work to bring families the best in medical education, emotional healing, and entertainment.

We welcome with enthusiasm the additon of Dr. Ernie Esquivel, a Yale University young adult nephrologist, will join Dr. Antignac's team on August 1, 2003. We want to thank everyone who has helped fund Dr, Corinne Antignac's vital research.

Please check our website at cystinosisfoundation.org for more information on the conference. Thank you, Frank Ritchie, for your timely updates as we anticipate another wonderful conference. Also, if you haven't checked out our Message Forum yet at our website, please do so. The Forum is a great way to share information you've learned through trial and error with others who are just now encountering those same problems.

The response to Brenda Broughton's letter was overwhelming and a questionnaire addressing the issues raised will be added to the Web site.

I am sad to report the death of Nyla Stassen-Robinson.. Nyla was a lab technician, and lived in Clifton, Colorado. Survivors include her husband, Stacey, her daughter, Jasmine, her mother Mary Pauley of Clifton, her father, Al Stassen of Grand Junction, four brothers, and two sisters. Nyla will be missed by all who knew and loved her.

With Best Wishes
Jean Hobbs Hotz,
President, Cystinosis Foundation

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May 2003

Dear Friends:

Please come join us in celebrating the 19th Annual Cystinosis Foundation Confernce on the campus of the University of California, San Diego, in La Jolla, California, August 15 and 16. The Conference will be a coat of many colors, as families gather to share their joys and sorrows. The Conference is much like a family reunion with families renewing old friendships and making new friends. The children enjoy playing together and exploring new activities.

The Conference offers a short course in cystinosis research as we listen to world authorities speak of cystinosis research "on the cutting edge". Dr. Corinne Antignac, Necker-Enfants Malades Hospital, Paris France is the Keynote Speaker. Dr. Antignac has developed a mouse model with cystinosis. Dr. Minnie Sarwal, Stanford University, Stanford, California. Dr. Sarwal is on the Steroid Free Transplant Team, that has pioneered Pediatric Steroid Free Transplantation in the United States. Dr. Jerry Schneider, Dean of Academic Studies, University of California, San Diego. La Jolla, California, Dr. Schneider pioneered numerious studies in cystinosis which led to better understanding of the disease. Dr. Ranjan Dohil, University of California, San Diego, Dr. Dohil will shortly begin a new study, which he will discuss, Stephanie Cherqui, Scripps Research Institute, La Jolla, California, is working on Stem Cell Research for Diabetes. She will share this vitally important reserch information Dr. Doris Trauner, neurologist at the University of California, San Diego,, discovered that some of the children with cystinosis learn differently. She will continue offering testing on a volunteer basis, Angela Ballantyne, Ph.d, is a member of Dr. Trauner's cystinosis research group, and she will report on some of the results of testing.

"Daily Living with Cystinosis', will be addressed by Don Hammond of San Jose, California. Don is in demand at the Conferences and has guided many of the parents through difficult and painful times. he list goes on, as the Committee, Merle Mund, Jane Lemar, Stephanie Gillenberg, Laura Reeves, Gloria Ramos, and Bonnie Paju work to bring families the best in medical education, emotional healing, and entertainment.

In this time of economic crisis we have tried to keep the costs as low as possible so as many families can participate as possible. We will be staying in the two bedroom student apartments on campus, Meal tickets are required for part of the meals. The apartments are available before and after the Conference at the same discount and the meals are optional. You may expect the information packet next week. In the meantime for more information please contact Gloria Ramos at gramos@sbcglobal.net or 800-392-8458.

Cystinosis is an expensive disorder. For some families after paying for many medications, trips to doctors or hospital, there are little funds left for the Conference. The Foundation wants to help families who will be denied attendance at the Conference because of lack of money for transportation. WE are turning to you for help in this area. If you have frequent flyer mileage that you are not going to use, will you please consider donating them to a family, or mother and child, so they can leave the isolation imposed by distance, and join other families and the medical professionals for two days of sharing. If you can help a family or mother and child with your frequesnt flyer mileage please contact Jane Lemar, who will be happy hear from you. Jane's E mail address is jlemar@independentdispatch.com and jlemar7600@yahoo.net.

There are no words to express our gratitude to the Presenters, who are taking personal time to be with us sharing their knowledge which lessens our fears, and fuels our determination to continue pushing to improve the quality of life for all with cystinosis while looking forward to eventually conquering cystinosis.

A special session will be set up with Dr, Trauner for parents who are confronted with behavioral problems, so please respond to Belinda Broughton's message.

We want to thank Laura Reeves for volunteering to edit the Yearbook and Tom Fencil, Publication Printing for donating the printing. Please complete the questionnaire, include a photo, and send directly to Laura, As she said , "It is a wonderful resource of contact information.".

Have you checked out the message forum recently? Frank Ritchie, Webmaster has set up the Message Forum. It is a great tool for learning and sharing. We are grateful to Frank for moderating the Message Forum, and our thanks to Assistant Moderators. Seandradh and Al O'Cathasaigh, Sue Scott, Serena Scott, Anne Claire Panisset, Jonathan Terry. If you have not tried it out yet, Just go to the Web page and click on Message Forum and follow directions.

Anne Hotz will have the Newsletter ready for publication in the coming week. If you have picture and stories for Anne, please send them to her: annehotz@sbcglobal.net.

The Cystinosis Foundation has hosted 18 National and International Conferences in the United States,two International Conferences in Europe, Italy and France, two Regional Conferences, Seattle and Atlanta, two Symposiums, San Francisco and Anaheim. We are planning a special suppliment, and would like for you to send your favorite photos from Conferences you have attended.

With Best Wishes
Jean Hobbs Hotz,
President, Cystinosis Foundation

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March 2003

Dear Friends:

We realize many of you are interested in the progress of the FDA approval of the cysteamine eye drops, so we are sending information of the U.S. Cysteamine Eye Drop Development. We are indeed grateful to Sigma-Tau Pharmaceuticals, Inc. for stepping forward, to develop the eye drops, while other pharmaceutical companies held back. This has been a daunting task, and the cystinosis community will be forever grateful to Sigma-Tau for their dedication and loyalty in alleviating the pain and suffering of the eyes, of cystinosis patients. by bringing the cysteamine eye drops through the FDA approval process and to market.

Mack Maxwell, a well traveled adult, has developed an exercise program that we want to share with you. Mack has a long term exercise plan that works for him. We asked him to share his routine with the cystinosis community.

Mack wrote."I think what has really helped me is that I"ve done it long term. The following is a few thoughts that I have about the necessity of exercise for a person with cystinosis. If I miss working out with weights for a couple of weeks, I can definitely tell. Even missing a few weeks, I can tell that I am substantially weaker. Any time this happens, it motivates me to hit the gym, get back in shape, and regain my strength. Basically it is the same with aerobic workouts, too. Just a few missed workouts and I can tell a difference. For me, I've got to keep my lungs strong. Some days, I do a slow jog for 15 minutes, which is about 1.5 miles. This is done for endurance. Doing 20 minutes on the stair stepper is another exercise that I do frequently."

Please check with your doctor before beginning an exercise program.

It was with great joy that we learned Sharzad Mohammadi and her mother Farzaneh had returned home to Tehran after Sharzad's successful kidney transplant in London. Farzaneh was the donor. Mother and daughter are both doing well. Many of you will remember Sharzad and Farzaneh from the Foundation's Conferences. Please send your cards of good wishes to them in care of the Foundation and they will be forwarded to them.

We are happy to report that David Reuter is home from the hospital, where he had an appendectomy. David had a rough time, and is happy to be home and in school again.

Dan, David's father, participated in the Annual Sweetheart Hot Air Balloon Rally and raised funds for cystinosis research. Check the Web site for more information and pictures of this extraordinary family. Thanks Dan, Holly and crew.

I cannot end without thanking our generous Webmaster, Frank Ritchie, who provides the wonderful Web site for all of us to learn from and to enjoy.

With every good wish

Jean Hobbs Hotz,
President, Cystinosis Foundation

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July 2002

Dear Friends:

World leaders in the field of cystinosis met with families and others in the Medical Community June 26, 27, 28, in France to share knowledge and Fellowship in their partnership of caring for children and adults with cystinosis. The Second International Cystinosis Congress was a collaboration of the Cystinosis Foundation in the United States and AIRG of France. This extraordinary event was sponsored by Sigma-Tau Pharmaceuticals, Inc. from the United States, AIRG, Orphan Europe, Association Theodora, Pharmacia Endocrinologie, Sylive Voyages, AFM , and Euro Disney S C A. from France.

Professor Michel Broyer from the Necker-Enfants Malades Hospital in Paris, France, chaired the meeting, "New Frontiers of Hope". WE are very grateful to Francois Couppey , Samantha Parker, Isabelle Manciet, and Francoise Couppey , for their time and energy in organizing the successful Congress.

Adult Issues, facilitated by Tom Melang U.S.A., posed a range of problems for lively discussion. Doctors engaged in the Session were Dr. William Gahl, , U.S.A., Dr. Jerry Schneider, U.S.A., Dr. Maggie Fitzpatrick, Leeds, England, Dr. Mignon Moyle, Australia, Dr. E. Levtchenko, The Netherlands, Dr. Barbara Enke, Germany. Adults from around the world attended the session, and contributed to the various discussions. Tom is readying a report of the Session, which he will Present at the Foundation's Chicago Conference. It will also be made available on the Web and in print. More of this exciting event on the Website cystinosisfoundation.org and in the upcoming Newsletter.

The Eighteenth Annual Cystinosis Foundation Conference will take place at the Hyatt Regency Hotel in Oak Brook, in the Chicago area.. The street address is 1909 Spring Road, Oak Brook, Illinois. Telephone 630-472-6029, July 24, 25, 26, 27. A Reception dedicated to Cody Becht by his family will be held Wednesday 5:00-8:00 PM. A copy of the Agenda is enclosed. .

We are overjoyed at the number of families who will be attending the Conference in Chicago. It is gratifying to see the newly diagnosed families and to see the number of families who have attended Conferences in the past. We are grateful to our volunteers who are working so diligently to bring the best to the families who will be attending the Conference. Special thanks go to Holly and Dan Reuter, Joan Hohl, Louise Limacher, Frank and Karen Ritchie, Anne Hotz , Sylvia Douglas, Bruce and Merle Mund,


With every good wish

Jean Hobbs Hotz,
President, Cystinosis Foundation

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June 2002

Dear Friends:

"PURSUING A CURE FOR CYSTINOSIS" was the theme of the 1999 National Cystinosis Foundation Conference in La Jolla, California. The Cystinosis Foundation continues this theme as preparations are being made for world leaders in the field of cystinosis to meet in Paris, France to share last years progress with each other and the cystinosis community. Meeting in Europe also strengthens the bonds among affected families all over Europe and even parts of Asia. This is a community probably larger than all of North and South America combined. We believe we can work with this community to help develop strong centers of leadership to strengthen the families and generate support for the medical and biochemical research necessary to achieve the goals of effective treatment and eventual cure. A strong cystinosis community in Europe and Asia will only help. I remind you that the CTNS or cystinosis gene was found in the collaborative work of an Anglo-French team of researchers. Much progress has been made in the past 20 years toward understanding cystinosis but much remains unclear. To quote Professor Michel Broyer, "We are convinced that shared knowledge is the basis for best disease management, and will have an impact on compliance with a difficult treatment. It will also give hope for the future."

The Second Cystinosis International Congress will be held in Paris, France; 28-30 June, 2002 under the auspices of the Cystinosis Foundation and the AIRG(the Association for Information and Research on Genetic renal diseases); an organization created in France in 1988. The official languages of the Conference will be English and French. Parallel sessions will be held in both languages. The roster of Medical Presenters is comprised of world authorities in the field of cystinosis. The Congress opens Friday afternoon at 14:00 with an "Adults with Cystinosis", workshop, with Tom Melang and Don Hammond facilitating. Participating in this very important session will be Jonathan Terry, from the United Kingdom, Joshua Hotz, United States, Serena Scott, Australia, Anne-Claire Panisset, France, Sarah Melang, United States, and others whom we do not know, at this point. Participating from the Medical Community will be Drs. Corinne Antignac, France, William Gahl, United States, A. Levenchenko, The Netherlands, Mignon Moyle, Australia, Minnie Sarwal, United States, Jerry Schneider, United States, and other doctors may join as well.

This Session will be followed by a Reception at the Hotel Mercure, honoring the families and those of the Medical Community. We will include an insert of the Agenda in this letter, and it will be on our Web site. If you have any questions for the authorities, please mail them to the Cystinosis Foundation , where they will be typed on 3x5 cards and taken to the Congress, where they will be answered. This event and the International Congress in Bergamo, Italy were made possible by the generous funding of Sigma-Tau Pharmaceuticals, Inc., with special thanks to Justina Lambert and Ken Mehrling.

The 18th Annual Cystinosis Foundation Conference will take place at the Hyatt Regency Hotel, Oak Brook, in the Chicago Area. The Conference will kick off the evening of July 25, with a Reception dedicated to Cody Becht by his family. Authorities in the field of cystinosis will be participating, and you will be receiving Agenda and other information including directions , under separate cover. WE are exceedingly grateful to our Presenters, who have agreed to participate in the National Cystinosis Foundation Conference, after returning recently from the International Cystinosis Congress. Drs. Corinne Antignac, France, William Gahl, Jerry Schneider, Doris Trauner, Angela Ballantyne, , Ranjan Dohil, will participate in the Conference as well as Dr. Jess Thoene. For further coverage of the 18th Annual National Cystinosis Foundation Conference please check out our Website, http://www.cystinosisfoundation.org.

We are fortunate in having from the area Dr. Craig Langman, Northwestern University School of Medicine and Dr. Susan Thomas of CS Mott Children's Hospital, University of Michigan Medical Center, Ann Arbor, Michigan, Dr. Monte Del Monte also from University of Michigan Medical Center, and a little further away Dr. Ted Groshong, University of Missouri School of Medicine.

Our thanks to Mylan , ProCare, and Cody Becht's family for their contributions to this event

A reminder, to contact Laura Reeve if you want your child's photo and profile in the YEARBOOK. Laura's email address is jreeves3@socal.rr.com or as an alternate you could use: Ladytech1216@excite.com.Our thanks to Tom Fencil for printing the YEARBOOK.

The Deanne Lynn Potts Scholarship information is on our Web site. The Scholarship is not limited to residents of the United States. Former recipients of the Scholarship were Kim Riedel, United States, and Anne-Claire Panisset Vellard, France.

Shannon Paju, a talented young actress, has recuperated from a successful kidney transplant. Shannon is making her mark in in the entertainment field, on stage and on television. Shannon's address is:
Shannon Paju
1333 Latona
Anaheim, CA 92804

Erin Preciado, formerly Erin Bowers participated in numerous tests as doctors searched for better treatments. She also attended the first function of the Foundation. Erin and her husband Dan attended the Foundation's Conference in Las Vegas. She is on dialysis and waiting for a transplant. Please send your cards and notes to her at:
Erin Preciado
412 Bremerton Ct.
Roseville, CA 95661

With every good wish

Jean Hobbs Hotz,
President, Cystinosis Foundation

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April 2002

Dear Friends:

CVS ProCare had the answers and we are grateful to Jen Mc Donough and her team for sharing their knowledge in the Chat Room. It was a very informative evening . Of special interest was ProCare's ability to refill a patients various meds on the same date,which eliminates numerous trips to the pharmacy. Our thanks to Don Hammond for facilitating the Forum. We look forward to another Forum featuring the representatives from ProCare.

Thanks to Bob Riedel for reminding us that the week of April 21-27 is National Organ and Tissue Donor Awareness Week. Bob has written eloquently of the need for National Organ and Tissue Donor Awareness Week.

Please watch the Web site for a page of the Yearbook. Laura Reeves, stepgrandmother of Bailey Riesch is editing the Yearbook and Tom Fencl of Publication Printing will print the Yearbook. Laura will also include a questionnaire on the Web so if you want to be a part of this family project please complete and scan photos to Laura at Ladytec121@aol.com. Our heartfelt thanks to Laura, Tom and Publication Printing for donating time and supplies to this very worthwhile project.

Thanks to BreathAsure we will be receiving another shipment of their product. If you want a six months supply please call 800-392-8458, giving your name and address. Please speak slowly and distinctly, and request the amount you will need for six months. Mack Maxwell will distribute the product. Be sure to indicate how much is needed for a six month supply.

The Gunvar Eriksen and Bjorn Roth families of Norway attended the Cystinosis Family Week in Agrenska, Sweden. The Eriksen and Roth families attended the Cystinosis Foundation International Conference in Italy 2000. A Presenter at that Conference was Anders Olauson, President of Eurordis and Director of Agrenska. Mr. Olauson was the guiding light for the Cystinosis Family Week at Agrenska.
"The family education program at Agrenska lasts five days. A private room in the guest house is provided for each participating family. All practical details are arranged by the staff of Agrenska. For example the meals are especially prepared by knowledgeable staff to accommodate specialized dietary needs.
While the parents are engaged in their program, the children are offered a program of their own by qualified staff. It is crucial for parents to concentrate fully on the week's program and to be completely assured that their children are secure and engaged in safe and productive activities. "
The Cystinosis Family Meeting in Agrenska was a very enriching and rewarding experience for parents and children.

Plans are finalized for the Cystinosis International Congress in France. This will be a great opportunity for families to come together with world authorities in the field of cystinosis. We hope families who attended the Congress in Bergamo, Italy will be able to attend and to take advantage of the voluntary testing by Dr. Doris Trauner's Cystinosis Research Group. We heartily welcome the new families. Currently we are expecting families and Speakers from England, Ireland, Germany, Norway, Italy, Sweden, Saudi Arabia, and the United States as well as France.

Once again cystinosis researchers will come together to share their knowledge and to discuss with each other the progress that has been made and pose the question, "Where do we go from here?" It is important that the doctors have time with each other to discuss the mysteries of cystinosis.

We want to thank Justina Lambert, Ken Mehrling, and Sigma-Tau for providing the generous funding that made the International Congress in Bergamo, Italy and the Congress in France possible. Also we thank AIRG of France for their collaboration .

Plans for the Chicago Conference are still in the planning stages. It is our hope that many families will be able to attend due to the location. We had a large turn out at the Ann Arbor Conference and it looks as if the Chicago Conference will be well attended also. The Mid West Retreat was cancelled in favor of the National Conference. We hope to see many of the families from the Mid West who meet annually. We also, welcome our friends from Canada.

Please check our Web site for information concerning the Deanne Lynn Potts Scholarship. The scholarships are not limited to United States residents, but are available to any student with cystinosis.
Former recipients of the Scholarship were Kim Riedel, United States and Anne-Claire Panisset, France.

Congratulations to Shannon Paju for her successful kidney transplant. Shannon is a talented young actress who is making her mark in the entertainment field. Shannon's mailing address is :
Shannon Paju
1333 Latona
Anaheim, CA 92804

Erin Bowers, was one of the first children to attend a Foundation function. Erin is now married and living in northern California. She is on dialysis and waiting for a transplant. Erin can receive your cards and notes of encouragement at:
Erin Preciado
412 Bremerton Ct.
Roseville, CA 95661

With every good wish

Jean Hobbs Hotz,
President, Cystinosis Foundation

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January 2002

Dear Friends:

State boundaries and country boundaries have fallen. Cystinosis is a global disorder and our hands extend across the oceans to all families. The Cystinosis Foundation International Cystinosis Conference in Bergamo, Italy opened the door for fellowship with families across oceans. It also, allowed the researchers to meet to exchange ideas in their search for better treatments and a cure for cystinosis. We consider the Conferences opportunities for education, as world authorities in the field of cystinosis share their expertise with the medical community and families who have gathered for fellowship and education.

Plans are underway for the Second International Cystinosis Conference to be held in Paris, France, June 29,30, 2002. This Conference is the first collaborative effort of the Foundation. The Association for Information and Research into Genetic Renal Diseases and the Cystinosis Foundation are organizing the Conference. Families from Ireland, England, Germany, Poland, Netherlands, Italy, have indicated their interest in attending. Medical Authorities in the field of cystinosis will be gathering from countries around the globe. Please see our Web site at: http://www.cystinosisfoundation.org for further information.

As Chef Paul said in an early PSA, "Cystinosis is no longer a secret.."

There is excitement as plans unfold for the Annual Conference in the United States. The Conference is scheduled sometime during the first two weeks of August, with the exact date to be determined. We are deeply grateful to Dave and Christey Greeley for being Co-chairs of the event. Joining the Greeleys' in making preparation plans for the Conference will be Dan and Holly Reuter, Joan Hohl, Frank Ritchie, Bruce Mund. Chicago, has long been a very desirable site for a Conference, with its many attractions for families, and the proximity of the great Medical Schools.

I would like to share with you a message from Dr. Jess Thoene of Tulane, He says,

"We all recognize that the ultimate goal of the Cystinosis Foundation and the investigators studying cystinosis is to perfect a permanent cure that does not require administration of unpleasant tasting medicine or eyedrops. Clearly, gene therapy is the only avenue yet known that offers that possibility, but successes in this field are few, and risk attaches to the clinical trials. The standard approach is to progress from rodent to primate in showing efficacy and safety, before clinical trials in patients can be allowed."
"Recent studies have shown that rodents are so different from primates that lessons learned in mice may not translate to monkey or man. We are therefore planning a series of trials in rhesus monkeys to determine if we can get expression of a reporter gene in monkey kidney. Kidney tissue has been very difficult to breach, and genes placed there often don't function. We are fortunate in having the Tulane Primate Center as part of this complex, and have applied for venture funding to do a small pilot study there in collaboration with the primate specialists. They include skilled surgeons and veterinarians who will help us with the gene delivery. If we are successful, then more extensive primate studies can be undertaken, and support sought from NIH."

Congratulations to Victor Gomez for founding the Cystinosis Foundation, Mexico. Victor has worked long and hard to pull it all together. Anyone wishing to contact Victor can contact him at his E-mail address; victore18@hotmail.com. See our Website for a link to more information on Cystinosis Foundation, Mexico. Victor will endeavor to educate the medical community and general public to the concerns of cystinosis. He first became a part of the cystinosis community 10 or 11 years ago when he and his parents traveled from Mexico City to La Jolla, California, U.S. to attend a Foundation conference.

He renewed friendships in 2001, when he and his parents returned for the Foundation conference in Las Vegas. He returned to Mexico City to found the Cystinosis Foundation, Mexico. While in Las Vegas he became fast friends with Mack Maxwell of Texas. Mack recently vacationed in Mexico city with Victor, his family and friends.

Our heartfelt thanks to Gloria Ramos for translating some of our information into Spanish.

Erin Preciado is home after several trips to the hospital. Erin, formerly Erin Bowers, has participated in different research studies. She is waiting for a transplant. Erin's mother Sue is not a match. Please send your cards and notes of encouragement to:
Erin Preciado
142 Bremerton Court
Roseville, CA 95611

Kim Riedel is home from the hospital. Kim is an adult with cystinosis, and was awarded the first Lynne Potts Scholarship. Kim can receive your notes and cards at home;
Kim Riedel
2820 Irene St.
Bellevue, NE 68147-1947

If you want BreathAssure, please contact Mack Maxwell at 817-561-5510 or mackm@flash.net. Mack is 37 and lives in Burleson, just outside of Ft. Worth, Texas. He graduated with a B.S. in Information Systems from University of Texas in Arlington in 1986. Since college he has always worked as a programmer analyst. He is currently the lead programmer analyst for his group at Tarrant County College. His hobbies are traveling and sports.

Our heartfelt thanks to Laura Reeves who will be working on the Year Book, Directory, It will be an on-going project, so if you have missplaced your questionnaire please call 800-392-8458 for a replacement.

Thanks are due to Tommy Hernandez who hosted The Third Annual Bowling Tournament, in Wisconsin, honoring Cody Becht. Ken Heinemeyer, Cody's grandfather has hosted numerous fundraisers honoring Cody. Ken has not been well and we wish him the best of health for the new year.

Once again Stephanie Gillenberg "Wrapped for Cystinosis Research". Stephanie and Louise Limacher wrapped for Barnes and Nobles, while I wrapped at Borders. For two years Stephanie, mother of Kurt and Claire has taken time from her very busy schedule to wrap packages over the holiday season. Louise has three grandchildren with cystinosis, and is a devoted volunteer and advocate for education and medical research. Thanks for your contributions and for your educating the public in the book stores, to the concerns of cystinosis.

Our thanks to Jessica Reisch and her grandparents, Max and Diane Throckmorton for their fundraising at Uncle Vitos. Jessica, her mother Sherry Boucher, sister Brooke, and her son Bailey, the adorable red head, attended the Conference in Las Vegas.

Thanks to all of you who participated and are continuing to participate in calling your Senators to encourage him/her to co-sponsor the Rare Diseases Act S.1379. We are including some messages which were sent out earlier by Email. We also, encourage you to call your Representatives when the time comes.

Dr. Neil Buist, a great humanitarian, on our Board is off again on a journey to serve humanity. Before his semi-retirement he was the attending physician for cystinosis patients within 500 miles of Portland, Oregon. He is now in voluntary service with the Northwest International Medical Team serving in Afghanistan. Also, serving in the area are English and French doctors with Save the Children and the International Relief Agency. Dr. Buist is working in the camps where he is lending expertise in nutrition, for the tremendous needs of the people there. Prior voluntary service was in Cambodia, and we know that he will once again serve with valor where the need is the greatest.

Sincerely,

Jean Hobbs Hotz,
President Cystinosis Foundation

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October 2001

Dear Friends:

This is a time of great sorrow and sadness, not only for Americans but for our friends in the four corners of the earth. Families from many nations, who lost loved ones in the devastation in New York and the Pentagon, are living with sorrow and grief, also. The whole world mourns. We have received messages of condolences at Foundation headquarters from people around the world , for which we are truly grateful.

NORD UPDATE The NORD Conference was cancelled due to the events of September 11. NORD was chartering a bus to transport Conference attendees to Capitol Hill where we would meet with our legislators to discuss health issues. Cystinosis Foundation also planned an exhibit in the Exhibit Hall with thanks to Sigma-Tau's generous support Since we were unable to meet with our Senators in Washington, we will continue to write letters and make phone calls, It is important that we contact the members of the Health, Education, Labor and Pension Committee, whose names, names of aides and phone numbers will be included in this letter.
Despite the carnage in New York and Washington,D.C., I urge those of you who have not written to your senators to sit down and send your message to Washington now. How long can it take? Your support of the Rare Disease Act 2001 is imperative. We will also be writing to our representatives, as soon as a companion bill has been introduced on the House side. You will receive a mailer with information concerning the Rare Disease Act S.1379. Please share this information with your relatives, neighbors and friends. Our goal is for each family to contact five other individuals to raise their awareness to the importance of S.1379, and ask them to write their legislators.
A message from Diane Dorman, Sr. Director of NORD reports that Senator Edward Kennedy's office has confirmed that the Rare Diseases Act (S.1379) will be brought up for consideration by the Senate Health,Education, Labor, and Pension Committee on Wednesday, October 10. Now is the time to write those letters and make those telephone calls to key Senators on the Committee including Senator Gregg, Ranking Member and Senator Frist, If you have members in Tennessee, especially, encourage you to ask them to contact Senator Frist's Washington office immediately. Many members turn to him for guidance on health related issues because he is a physician.
LET YOUR SENATORS KNOW THAT YOU WANT THEM TO SUPPORT PASSAGE OF THE RARE DISEASES ACT OF 2001 (S.1379)
The following members are currently cosponsoring S.1379: Hatch (R-UT), Bingaman (D--NM), Hollings (D-SC)and Durbin (D-IL)
Edward Kennedy (D), Chair MAA Paul Kim 224-4543 224-2417
Christopher Dodd (D) CT Debra Barrett 224-2823 224-1083
Tom Harkin (D) IA Adam Gluck 2224-3254 224-9369
Barbara Mikulski (D) MD Stephanie Sterling 224-4654 224-8858
Jeff Bingaman (D) NM Bruce Lesley 224-5521 224-2852
Paul Wellstone (D) MN John Gilman 224-5641 224-8438
Patty Murray (D) WA Anne Grady 224-2621 224-0238
Jack Reed (2) RI Lisa German Foster 224-4642 224 4680
John Edwards (D) NC Kyl Kinner 224-3154 224- 3154
Hillary Clinton (D) NY Megan Thompson 224-4451 228-0282
James Jeffords (I) VT Sean Donohue 224-5141
Jud Gregg ,R, Ranking Member NH Katy French 224-3324 224-4952
William Frist ,R, TN Craig Burton 224-3344 228-1264
Mike Enzi ,R, WY Mary Jordan 224-3424 228-0359
Tim Hutchinson ,R, AR Kate Hull 224-2353 224-3973
John Warner ,R, VA Tom Super 224-2023 224- 6295
Christopher Bond ,R,MO Kara 224-5721 224- 8149
Pat Roberts ,R, KS Lisa Meyer 224-4774 224-3514
Susan Collins ,R, ME Priscilla Hanley 224-2523 224-2693
Jeff Sessions ,R, AL Laura O'Neil 224-4124 224-3149
Mike De Wine ,R, OH Dionne Braddix 224-2315 224-6519

Diane E. Dorman, Sr. Dir. for Public Policy
National Organization For Rare Disorders-Washington Office

RESEARCH The Foundation is supporting the work of research scientists in England, who are working to develop a Time Release Capsule, which would allow for dosage of cysteamine twice a day instead of four times every 24 hours. The quality of life of individuals with cystinosis will certainly improve. Surely there will be better compliance if the medication is needed two times daily instead of four.

FAMILY SUPPORT Zack Ritchie's friends will be happy to know he is doing well, and that the Kidney Transplant without steroids has been successful. Zack was the first cystinosis patient to under go the steroid free transplantation. Congratulations Zack.
Erin Bowers Preciado plans to be released from the hospital today. It has been a rough month for her. Erin and her husband, Dan attended the Conference in La Vegas . In the past Erin participated in a number of research studies. Cards and notes may be sent to:
Erin Preciado
142 Bremerton Court
Roseville, CA 95611
Lana Farley who has cystinosis, is married and has a son, Daniel 6 years of age. Lana , husband James, and son Danny also attended the Conference. They made the drive from Texas and were a welcomed addition to the Conference. Lana is having some problems now with her kidney. You may send your cards and notes of encouragement to:
Lana Farley
1539 Hillwood Dr.
Granite Shoals, TX 78654
Gerardina Lotrecchiano is doing well after her kidney transplant of three months. Gerardina is an inspiration for the Cystinosis Foundation, New Jersey, and to all who know her.

FUNDRAISING Friends of Joshua just informed us that they will be having a Holiday Bazaar on Saturday, December 1. This will be a happy event with desirable hand crafted items for sale with proceeds going toward research. If you have any hand crafted items you wish to donate please contact Headquarters 800-392-8458 . Paul Chichelo and Ettore Turano Cochaired a successful Golf Tournament in New Jersey for the Cystinosis Foundation, New Jersey. Congratulations Paul and Ettore ! Watch the Web site for pictures and more information about the golfing event. Heartfelt thanks to Dan and Holly Reuter for their Hot Air Balloon Ride fundraising, in Minnesota. In a week or two Frank will have, on the Web site, beautiful pictures of the Hot Air Balloons crusing above the snow covered countryside, These pictures are guaranteed to make you want to go for a Hot Air Balloon ride in the peaceful Minnesota countryside.

CONFERENCES Cystinosis Foundation, UK and Eire held their National Cystinosis Conference in northern England September 28. Jonathan Terry, Founder reports another successful Cystinosis Conference with pictures and text to be added to Cystinosis Foundation UK and Eire link on United States Foundation's Web site, cystinosisfoundation .org. Congratulations to Jonathan and our friends in England and Ireland.

Marjolein Tromp and her husband Jan will host a Cystinosis Conference in the Netherlands, October 7. This is the second Conference the Tromp family has hosted. Families or anyone interested in learning more about the group in the Netherlands may contact Marjolein or Jan at www.m.vtromp@hetnet.nl. A report of the Conference will be in English on the Foundation's Web site, and in Dutch on their Website http://stofwisselingsziekten.nl/cystinose/. With every good wish,

Jean Hobbs Hotz,
President Cystinosis Foundation

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August 2001

Dear Friends:

LETTERS of SUPPORT for the RARE DISEASES ACT 2001 - Many thanks to all of you who have written letters of support to Senator Orrin G. Hatch and Senator Edward M. Kennedy for introducing, S.1379, Rare Diseases Act of 2001. We urge you not only to write Senators Hatch, Kennedy and your local senators, but that you also ask at least five relatives and friends to write and call their senators as well. By networking in this way our voices will be multiplyed by five.

From NORD: Diane Dorman, Senior Director of Public Policy at NORD, was a Guest Speaker at the Cystinosis Foundation's Internation Conference in Las Vegas We are grateful to her for sharing information with us and instilling the thought that we can make a difference. For further information, she can be reached by e-mail at ddorman@rarediseases.org or (202)496-1296 you can track the status of all federal legislation on the Library of Congress Internet site http://thomas.loc.gov/. You can search the site by entering a bill number or the name of the legislation. You will be able to locate the text of a bill, a list of co-sponsors, the status of the bill, and other information, A link for "Bill Status" provides information about what congressional action has been taken and when it is presented to the White House for the President's signature.

STEPHANIE GILLENBERG ACKNOWLEDGES the MEDICAL RESEARCH COMMUNITY

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July 2001

Dear Friends:

With great anticipation we are looking forward to the opening of our annual Cystinosis Foundation Conference at the Alexis Park Resort and Spa, Las Vegas, Nevada, United States, on July 16,17,18,19. We anticipate a banner year due to progress being made in the scientific world.

Dr. Corinne Antignac, one of the collaborators from Hopital Necker-Enfants Malades in Paris, France who discovered the cystinosis gene will be a Guest speaker. From the United States, Drs. William Gahl, National Institutes of Health, Jerry Schneider, University of California, San Diego, Jess Thoene, Tulane University and Doris Trauner, University of California, San Diego will share the podium. Dr. Donald Cairns, from Sunderland University, England, will join our roster of authorities in the field of cystinosis. Dr. Santopietro from Children's Hospital Boston will conduct a Foot/Leg Disorders Clinic. No appointment is necessary. Any cystinosis patient at the Conference may be seen by Dr. Santopietro. The UCSD Pediatric Neurology Research Group, directed by Dr.Doris Trauner, will be conducting psychometric testing on individuals with cystinosis, carriers of the gene, and non-carriers. Testing is voluntary, but it is very valuable in helping the research group learn more about the cognitive and behavioral effects of cystinosis.

Parents what have "been there, done that," will share their experiences with the more recently diagnosed families. I use the words, "diagnosed families", because we find that cystinosis often affects the entire family,

We look forward to meeting the new families, who will be attending a Conference for the first time. This Conference is a result of the combined efforts of the Co-chairs Frank and Karen Ritchie, and the committee Sue Bowers, Jeff Bowers, Anne Hotz, and ad hoc member Jean Hotz, President. Frank and Karen have put great effort into making an unforgettable Conference for all who attend, from ages 1 to 80. Extended families are always welcomed to share the learning experiences and the camaraderie.

Unfortunately there will be a big void because of the death of Jerry Lotrecchiano. Jerry was a parent who cared and loved all children with cystinosis. With the death of his son Gerardo, at the age of five years, Jerry struggled to find a way to cope with his loss. With the help of his family, and good friends Monsigneur Emmanuel Capozzelli, Gaetano Di Benedetto, and Gerardo Di Benedetto, they formed the Cystinosis Foundation, New Jersey Chapter. His enthusiasm never wavered, and events were brightened by his presence. A great gift to children attending a Conference in Washington D.C. several years ago, occurred when Jerry and his family arrived in a regal white limousine. His family had a prior commitment to a wedding and so they brought the limo on over to the Conference, where Jerry treated them to a tour of Washington D.C. by night in the luxurious limousine. His greatest pleasure was in watching the joyous children enjoy a tour of Washington in the amazing limo. What memories!

Jerry's legacy of loving and caring for others has been passed on like a torch, to his wife Carmela and his beautiful daughters Gerardina, Maria and Laura. Your notes and cards will reach them at 14 Whitaker Ave., W. Patterson, New Jersey 077424—3037

With every good wish,

Jean

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May - June 2001

Dear Friends:

Dena Gard kicked off the "May-June Cystinosis Awareness Month" by speaking to the Kiwanis Club of Casey, IL. Several months ago, Mikeala, Dena's daughter, marched in a parade, distributed brochures and raised funds for cystinosis research that is underway in the lab of Dr. Jess Thoene,

WOMAN'S WORLD, The woman's weekly magazine recently featured an article , "The Best Daddy Ever." The article is the loving, compelling story of Rob Lee, stepfather and donor for Cheyenne, who had a kidney transplant at the age of eight years. Cheyenne was diagnosed with cystinosis shortly after her first birthday, Since her kidney transplant Cheyenne feels better than ever, and says that she, "Has the Best Daddy Ever ". Thanks to Rob Lee for giving the GIFT of LIFE!.

Stephanie Gillenberg and the committee for "May-June Cystinosis Awareness Month ," are working on a pictorial review honoring the Foundation's volunteers, past and present.

Our volunteers have ranged in age from three years to eighty, and this is our way of saying, we appreciate your taking time to help in the battle against cystinosis.

We will also be honoring the cystinosis researchers who have given our children and grandchildren a better quality of life, We want them to know that we realize and appreciate their vision and continued commitment, that has led to better treatments on the road to a cure for this devastating disorder. We need your help! We plan to send a proclamation to the researchers affirming our appreciation and support. We would like your letters and photographs to accompany this proclamation. Please give the Foundation permission to make copies of your letter and photographs for the cystinosis researchers. We realize that you are all busy, that this is bad timing, with the end of school year, but these researchers have given up family time, year after year to be with us at Conferences, they spend uncompensated time in their labs working late, unraveling the puzzle of cystinosis. It is they who are working long hours searching for better treatments and a cure. It is they who give us hope! Let us say THANK YOU for helping our children and grandchildren. Please send your photographs and letters to :

Stephanie Gillenberg ,20357 Fairweather St, Canyon Country, CA 91351

Dr. Jerry Schneider, University of California, San Diego, School of Medicine, expects the Prilosec Study to begin the first part of June. For further information about the study please contact Dr. Schneider or Dr. Dohil.

Jerry A. Schneider, M.D., School of Medicine ,UC San Diego 9500 Gilman Drive Dept. 0602, La Jolla, CA 92093-0602
tel: (858) 534-4877 , fax: (858)534-0338 jschneider@ucsd.edu

Ranjan Dohil, M.D.
Pediatric fax: (858) 495-8533 rdohil@ucsd.edu

Dr. Avery Weiss of Children's Hospital in Seattle, Washington can now be reached at (206) 526-2000. Dr. Weiss sees cystinosis patients and prescribes cysteamine eyedrops. Dr. Weiss, will be participating in the Annual Cystinosis Foundation Conference being held in Las Vegas, Nevada, United States, July 16,17, 18,19 at the Alexis Park Hotel.

Frank, Karen Ritchie, Sue Bowers, and Anne Hotz are working on the Conference. The Foundation will bring the latest in cystinosis education and research to the Conference. Those of you who attended the Foundation Cystinosis Conference in Waterville, New Hampshire, last year, will remember Dr. Frank Santopietro, who discussed Foot/Leg Disorders and Cystinosis, and also conducted a clinic. We are very fortunate to have Dr. Santopietro join us in Las Vegas, where he will conduct a clinic, so if your child is having foot or leg problems you won't want to miss this opportunity..

Dr. Santopietro is just one of the cystinosis specialists who will be participating in the Foundation Conference. Between now and the Conference we will be profiling the doctors who will be participating .

Our heartfelt thanks to all of you who are helping us "Spring into May-June, Cystinosis Awareness Month."

With every good wish,

Jean

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April 2001

Dear Friends,

Dr. Jerry Schneider, School of Medicine, University of California, San Diego ,writes:

We have received funding from AstraZenica, a pharmaceutical company, to study the effect of the drug Omeprazole (trade name Prilosec) in cystinosis patients who are having difficulty taking Cystagon because of gastric distress. The preliminary study will include 12 patients. We would prefer patients in the pediatric age range, but may be able to accept some older patients. We would especially like to find patients who are unable to take Cystagon, or only very small amounts of Cystagon, because of gastric distress. Of course, we hope to find if the proper dose of Prilosec will help cystinosis patients tolerate Cystagon better.

The study will include two admissions, four months apart, to the UCSD Clinical Research Center in San Diego for two days each. It will also include upper GI endoscopy on each visit. All travel costs, including airfare, car rental for 3-4 days, hotel accommodations and a daily living allowance for a relative will be provided. The patients will be compensated to the value of $200 per visit. We will try to schedule visits around school holidays.

Please let us know about any cystinosis patients who might be interested in the study. We realize we have only given a rough outline of the study. We would be pleased to speak with any parents or patients who would like to know more about the study.

Ranjan Dohil, M.D.
Pediatric G.I.
Pager (858) 493-3706
rdohil@ucsd.edu
Fax: (858) 495-8533

Jerry Schneider, M.D.
(858) 534-4877
jschneider@ucsd.edu
Jerry A. Schneider, M.D.
Dean of Academic Affairs
School of Medicine
University of California, San Diego
9500 Gilman Drive Dept. 0602
La Jolla, CA 92093-0602
Tel: (858) 534-4877
Fax: (858) 534-0338
jschneider@ucsd.edu


The Eyedrop Study has been finalized and Sigma-Tau Pharmaceutical, Inc. is working for FDA approval of the eyedrops. Some individuals with cystinosis are driving cars, employed, and involved in various activities as a result of Sigma-Tau's steadfast loyalty in developing eyedrops that would dissolve the crystals causing photophobia.


The Cystinosis Foundation, New Jersey, hosted its 17th Annual Dinner/Dance March 24, at the Venetian , in Garfield, New Jersey. It was a Gala Affair with 378 in attendance. Dance music was provided by Desiserio Music,, Desiserio excels in Italian/American/Latin music. Laura Chichelo was Mistress of Ceremonies for the event. Enza Marzullo and Gaetano DiBenedetto received special awards. Committees for the event were General Chairpersons: Leonardo Marzullo (Chairperson) Ad Book Committee: Enza Marzullo (Chairperson) Laura Chichelo, and Gaetano DiBenedetto. Raffle: John DiMilia (Chairperson) Ettore Turano, Maria Turano, and Jerry Lotrecchiano, Table arrangements: Maria Pontoriero (Chairperson), Carmela Lotrecchiano,, Angela Marzullo, Entertainment: Gaetano DiBenedetto. We will have pictures and more information on the fundraising section in a few days.


Our heartfelt thanks to Chef Paul Prudhomme for donating samples of his salt free Magic Seasoning. Cystinosis patients with high blood pressure, on a salt free diet may especially be interested in trying this tasty seasoning, to replace the salt. Just call 1-800-392-8458 and we will send a sample to you.

May is the month we set aside as Cystinosis Awareness month. We hope you will join us in our drive to educate the medical profession and general public to the concerns of cystinosis. Please help us distribute brochures. Just call 800-392-8458, and brochures will be mailed to you. Our continued thanks to Tom Fencl for his supplying the brochures. Call your local newspaper and television stations and get your story printed or on the air. Merle Mund will headline a May Basket fundraiser. Some of you may remember that Merle led a successful Basket fundraiser some years ago. We expect to do even better this year. Watch our Fundraising section for more information. Funds raised will go toward the support of Dr. Jess Thoene's very valuable research, which will benefit all individuals with cystinosis.

Naia Kelly, aunt of Laura McGinnis, produced a video to help us educate the public to the concerns of cystinosis. It is a six minute video edited by Cobra Productions, and is excellent for fundraising. If you are fundraising and would like a copy of the video, please call 800-392-8458. It is a fine addition to the Speaker's Bureau packet as well.


From Dr. Thoene;

With support from the Cystinosis Foundation, chimera mice with the knock-out gene for cystinosis have been created. Unfortunately, none of the 144 pups born to these males transmitted the mutation, so no true carriers have yet been produced. We have re-implanted genetically modified stem cells with the CTNS gene knocked out, and new chimera pups were born last week. When they are mature, we will see if their offspring transmit the mutation. This is a common obstacle in creating knock-out mice. The use of these animals in improving dosing of cysteamine and in developing gene therapy for cystinosis is described in the article I wrote in 1999.


Please check our Website to find a link to the GeneClinics Profile on Cystinosis", funded by NIH and published by on-line by the University of Washington. This information is especially appropriate for those in the medical profession. Frank Ritchie continues to provide us with an outstanding Website.

Karen , Frank Ritchie , and the Committee, Sue Bowers and Jeff Bowers, and Anne Hotz, are working creatively to bring to families , not only the opportunity of voluntary testing of their children and the adults with cystinosis, and information from authorities in the field of cystinosis, but they are also creating a vacation atmosphere with various activities.


From Anne Hotz: Cystinosis family conferences offer researchers wonderful opportunities to gather data and information from patients and their families, while they are all together for support and education. It is unusual for that many cystinosis subjects to be in the same geographic location for that long a time. The researchers have an opportunity to ask questions, do physical examinations, take blood and gather data, and then gather more data if there is a need.

Conferences have made published research papers possible. Published research papers spread interest in cystinosis, and creates more research. Conferences have also given the researchers and their families an opportunity to know one another. The researchers have a chance to differentiate the patients and their families from the research data they have read and collected. The researchers get to see the data as a living and thriving group of people. They get to see the hopes, fears, and joys. The families, on the other hand, get to see the researchers as real people, who don't always wear white lab coats and carry needles, who have families of their own. To the researchers and to the families who dedicate their vacation time to research and being researched, thank you for furthering the cause of finding a cure for cystinosis.


Congratulations to the Tromp family in the Netherlands for organizing a support group for cystinosis and for their informative Website, which you will find linked to the Cystinosis Foundation Website. The Tromp family attended the International Conference in Italy, where they made lasting friends. They may be reached by E-mail www.m.vtromp@hetnet.nl.

Also, Congratulations to Sue and Serena Scott of Australia, who are organizing a support group in their country Sue is the mother of Serena who is a young adult with cystinosis. Serena is a great pen pal, and is interested in corresponding with others, and would like individuals with cystinosis in Australia to know they are not alone and there is a support group. Her E-mail address is sweetblossom252@telstra.easymail.com.au


We hope you will all join us for MAY CYSTINOSS AWARENESS MONTH I have said it before. Alone we are a squeak, together a roar. Thank you for your dedication and support. We will continue working and supporting the researchers until they are victorious with better treatments and a cure for cystinosis, the disorder that effects the lives of our children grandchildren, and their families.

With every good wish,

Jean Hobbs Hotz President

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February 2001

Dear Friends,

Frank and Karen Ritchie, Co-chairs of the Annual Cystinosis Foundation Conference and the Committee, Sue Bowers and Anne Hotz, are planning an exciting Conference that you will not want to miss. The International Conference will take place at the Alexis Park Resort , a non-gaming Resort in Las Vegas Nevada, July 16,17,18,19 . The Conference has been extended an extra day to give more family and social time. Of special interest on the medical scene will be the report of Dr. Minnie Sarwal of Stanford University. Dr. Sarwal will report on the results of a Steroid Free Transplantation Study completed at Stanford. Dr. Jess G. Thoene will report on his valuable research in his pursuit of better treatments and a cure., and Dr. William Gahl, National Institutes of Health will present a report on the Eyedrop Study. Dr. Doris Trauner, Neurologist, University of California, San Diego and her Cystinosis Research Group will be present to conduct testing of the neurological and cognitive consequences of cystinosis. Testing is voluntary and the family will receive a report of the results.

Families attending the Conference will be happy to learn that at last, there is a tax break for parents . The IRS issued a ruling on May 8, 2000, which allows parents to deduct some of the expenses incurred while attending medical meetings which pertains to their child's health situation. According to the new ruling, "amounts paid by an individual for expenses of admission and transportation to a medical conference relating to the chronic disease of the individual's dependent". Further information may be obtained from the Internal Revenue Bulletin 2000-19 (May 8, 2000), Rev. Rul. 2000-24, pp 963-964

Dr. Avery Weiss, of Seattle Washington is examining the eyes of cystinosis patients and prescribing eyedrops for them. Families or individuals living in the Northwest may make an appointment with Dr. Avery by calling his secretary at (206) 526-2177 ext. 1461. Dr. Avery will also see adults with cystinosis who are in need of eyedrops.

Our heartfelt thanks to Jeff and Nancy Stack for their restricted funds which enabled the Foundation to provide a grant to Dr. Malcolm Coulthard and the Cystinosis Research Group at Royal Victoria Infirmary, Newcastle, England. Their work in progress is to develop a very slow release cysteamine capsule with minimal or no nausea, and with dosing reduced to twice a day.

We want to share with you the listing of the 2001 Congressional Leaders as listed in the NORD Bulletin, and hope you will make a hard copy and file it for future reference.

2001 CONGRESSIONAL LEADERS

Republicans

Majority Leader: Trent Lott (R-MS)
Majority Whip: Don Nickles(R-Ok)
Conference Committee Chairman: Rick Santorum (R-PA)
Conference Vic-Chair: Kay Bailey Hutchison (R-TX)
Policy Committee Chairman: Larry Craig (R-ID)
National Republican Senatorial Committee Chairman: Bill Frist (R-TN)

Democrats
Minority Leader: Tom Daschle (D-SD)
Minority Whip: Harry Reid (D-NV)
Caucus Secretary: Barbara Mikulski (D-MD)
Chief Deputy Whip: John Breaux (D-LA)
Committee Chairman: Byron Dorgan (D-ND)
Chairman: John Kerry (D-MA)
Technology and Communications Committee Chairman Jay Rockefelle (D-WV)
Steering and Coordination Committee Policy Assistant Floor Leader: Richard Durbin (D-IL)
Chief Deputy for Strategic Outreach: Barbara Boxer (D-CA

House leadership in the 107th Congress will be as follows:

Republicans

Speaker: J. Dennis Hastert (R-IL)
Majority Leaader: Richard Armey (R-TX)
Majority Whip: Tom DeLay (R-TX)
Conference Chairman: J.C. Watts (R-OK)
Conference Vice Chair: Deborah Pryce (R_OH)
Conference Secretary: Barbara Cubin (R-WY)
Policy Committee Chairman: Christopher Cox (R-CA)
National Republican Congressional Committee: Tom Davis (R-VA)

Democrats

Minority Leader: Richard Gephardt (D-MO)
Minority Whip: David Bonior (D-MI)
Democraatic Caucus Chairman: Martin Frost (D-TX)
Assistant to Minority Leader: Rosa DeLauro (D-CT)
Steering Committee C0-Chair: Steny Hoyer (D-MD)
Democratic Congressional Campaign Committee Chairman: Vacant

The following Senators are Chairmen and Ranking Members of the health related committees:

Health, Education, Labor, and Pensions:

James M. Jeffords, Chairman (R-VT)
Edward M. Kennedy, (D-MA) Ranking Member

Appropriations Committee:

Ted Stevens (R-AK)
Chairman Robert C. Byrd (D-WVA)

Best wishes,
Jean Hobbs Hotz,
President

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October 2000

Dear Friends,

The Conferences in Hannibal, Missouri, Waterville, New Hampshire and Ranica, Italy are covered in the Website and Newsletter. The Foundation's Conferences are an extension of Family Services. It is our hope and concern that every family has the opportunity to participate in a Conference. Enclosed is a questionnaire that will help us in planning more Conferences and Retreats for your convenience. Please complete and return to Headquarters so we can determine your needs. Thanks to Lonnie Hohl for writing the questionnaire. If any of you are intersted in Regional Family Retreats/Conferences please contact Lonnie and Joan directly.

We are planning a series of Forums. Teen Issues, Adult Issues, and Childhood Issues. Please join us Tuesday, October 10, for the first in this series, Teen Issues, hosted by Bonnie Paju. Under discussion will be such topics as peer pressure, adjustments in school, search for independence.

Your Internet browser will need to be able to run JAVA, and a link to the Foundation's Chatroom is at the top of the main page to this message forum or on the Foundation Homepage, if you would like to test your browser and see if you can log on the Chat room.

If you have issues you especially want to discuss under Adult Issues or Childhood Issues, please e-mail the questions to Frank Ritchie.

The New Orleans Conference is being rescheduled, and we will keep you posted. This will be an exciting Conference that you will not want to miss. On the Agenda will be a tour of Dr. Jess Thoene's lab, where significant research is being conducted. This research is being funded by the Cystinosis Foundation. Dr. Thoene continues to see patients at Tulane. If you want to make an appointment please call; Dr. Jess Thoene 312-223-6174.

Applications for the Lynn Potts Scholarship for 2,001 are available. Please call Foundation Headquarters 800-392-8458.

Eastside High School and Wade Hampton High School in Greenville,South Carolina, are raising funds for the Foundation for Dr. Thoene's cystinosis research. Frankie McGinnis gave a presentation at Eastside High School with her daughter, Laura. The entire class was shocked at the problems the adorable child goes through each day There was no doubt that the members of the Student Council were in favor of supporting the Cystinosis Foundation's research projects. Our Web page and Newsletter will have more information about the outstanding students in Greenville, South Carolina's Eastside High School and Wade Hampton High School, and their dedication towards helping Lauara McGinnis and the Cystinosis Foundation find better treatments and a cure for cystinosis.

You may still send your pictures and stories to:

Lee Fletcher
211 Castlewood Drive
Greenville, S,C. 29615

I am happy to tell you that Rebeckah Palmer of Menomonie is doing just fine. Rebeckah had a rough time but is back in school and doing well.

Cystinosis had another Awareness Week end at the Copper River Country Club in Fresno, Ca. Larry Huebner, Tennis Director. invited the Foundation to set up Cystinosis information. A number of doctors, as well as general public left the Tennis Club with new knowledge of cystinosis. Thanks again, Larry.

Our thanks to Dena Gard, for distributing brochures and raising funds. Ken Heinemeyer, grandfather of Cody Becht, once again raised funds for reseach and awareness of cystinosis. Tina Coger participatd in a fundraiser, and distributed information about cystinosis that contained a photo of Lesley. Their stories will be on the Web page and Newsletter.

Thanks to Lonnie Hohl and Merle Mund for composing the Conference Questionnaire. We hope you will complete it and return it to Headquarters or e-mail it to Frank@cystinosis.com.

We want to thank each of you, your children and the adults with cystinosis for helping the medical profession with its great research strides during the past decade. You are ALL heroes of the history of cystinosis. You volunteered your children for the study of cysteamine and other studies. What courage that must have taken, The children have been research subjects, and continue to be research subjects waiting for FDA approval of eyedrops, which soothe their eyes, The adults have been research subjects over and over, lovingly paving the way for the younger generation. Grandparents feel the pain and joys but sometimes feel very helpless.

We previously listed the great strides made in cystinosis research, but will list some of the achievements again for all the new friends of the cystinosis community.

Defect in Cystinosis has been found
Carriers can be detected
Cystagon approved by FDA
Gene for cystinosis isolated
Eyedrop studies with cysteamine
Carnitor approved in injection form for dialysis by FDA

Our continued thanks to the great Pharmaceutical Companies Mylan and Sigma Tau for their dedication in funding studies, and carrying through research projects for FDA approval. They are responsible for improving the quality of life for children and adults with cystinosis.

Best wishes,
Jean Hobbs Hotz,
President

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June 2000

Dear Friends,

It gives me great pleasure to share this message from Lee Fletcher with you. We will all want to cooperate with Lee and the students. Their compassion and dedication will benefit individuals with cystinosis, as researchers pursue better understanding and cure for cystinosis. It would be wonderful if we could match the funds raised by these devoted students.


Thank you for your many E-mails. I am not worthy of your gratitude. I have not done any great task. The hero in this story is a lady I had the pleasure of meeting last year while working a part-time job at Fazoli's. Frankie McGinnis and her daughter Laura, came to eat there often. For the last three years Fazoli's has hosted a Cystinosis fundraiser in May. It was after last year's fundraiser when I first mentioned Eastside's charity competition with Wade Hampton High School to Mrs McGinnis. She said that she had sent a request to our sponsor to be considered as last year's competition, but recieved no reply. I was on Student Council at the time, (Student Council decides which charity will be the recipient) but I never heard anyone say anything about Cystinosis. This year I posted information sheets on the Fazoli's fundraiser around the school. That same week the newly elected Student Council (I was elected again this year as an Executive Council member) was meeting to begin the Spirit Week charity selection.(we refer to this week as Wade Hampton Week.) As a few charities were mentioned another member who's name escapes me at the moment asked what the posters and announcements I had made were about. Ahh! her name is Lindsey Wesley. I spoke up and told them what I knew about Cystinosis at the time. Then, Mrs Mcginnis was invited to give a presentation. She came with Laura at 7:30 a.m. and gave all of the details of her struggle as well as your's to the class. She gave all of the painful details, which I had never heard or imagined. The entire class was shocked at the problems this cute little 4-year old girl has gone through everyday of her life. When it was time for each of the 30 or so Student Council members to say which charity they liked and why, it became obvious that a vote was not even necessary. Almost everyone agreed that the Cystinosis Foundation needed the money the most. Now this is only the begining of the story. Congratulations your voice has been heard. Next fall your voice will be heard by over 1300 teenagers and countless members of the Greenville, South Carolina Community. Last year's competition raised over $37,000 for The Children's Hospital. We raise money by smashing as many activities into 6 days as possible and writing letters to local business owners. Two years ago we recieved a check from a single company of $15,000. I am not sure exactly which week in the fall Wade Hampton Week will be, but as soon as I know I will let you know.(The date depends on the football schedule, and the unofficial check is given during the football game with Wade Hampton. I am going to enclose my address so that you can send me two things. Please feel free to send me the story of your ,or your child's struggle with Cystinosis. (This includes any person internationally.) My peers and I would enjoy hearing from the people we will try to help. I am also planning to make a collage of pictures to display at school. I would like one picture of every child and adult with Cystinosis possible. Please be aware that I may not be able to give these pictures back. My advice to your own fundraising is to gain access to the power of youth and the schools. Many Schools have very similar spirit weeks. Try to find out who runs these events and get their attention. The reason Mrs Mcginnis's first request went unanswered was who it was given to. It may not be the same at other schools, but at Eastside the students and only the students select the charity. Once our awareness was raised nothing could have stopped the outcome. Most teenagers will favor a charity involving children. Also, when you talk about the disease hold no facts back. It may be painful to say some things that need to be said. Like I said I had no idea about the full truth of Cystinosis until Mrs McGinnis spoke to us. I hope I have answered several of your questions without too many misspelled words, and I pray for your success in your fight with Cystinosis.
Thanks,
Lee Fletcher,
Eastside High School

From Frank Ritchie we learn:
We are planning a Real Time Chat with Phil Stinson, an Attorney specializing in Special Education Law, for parents and children of special needs. This is a MUST attend for those parents of school age children with Cystinosis.
Please email Frank or Debbie Beeler if you would like to attend and/or participate in this chat session. Your Internet browser will need to be able to run JAVA, and a link to the Foundation Chatroom is at the top of the main page to this message forum or on the Foundation Homepage, if you would like to test your browser and see if you can log on to the chatroom.

Cystinosis Conferences:
November 3,4,5 are the dates of the Cystinosis Conference in New Orleans. This will be a particularly exciting Conference because of the research of Dr. Jess Thoene , who is Professor and Chair of the Human Genetics Program, Hayward Genetics Center, School of Medicine, Tulane University. What a wonderful opportunity this will be for parents to meet Dr. Thoene and tour his lab. While the Agenda is not finalized Dr. Jerry Schneider will be Guest Speaker. Phil Stinson, Esq. will bring families up to date on the topic of Educational Rights of Children with Cystinosis. This is a Conference you will not want to miss, especially if you live in the south. Cheri Friend and Frankie McGinnis are Co Chairs of the event.

Colleen and Jack Hammond have been working hard to provide families with wonderful experiences at the Waterville Valley Cystinosis Foundation Conference, in New Hampshire. Time to register for that conference has been extended.

Registration is still going on for the Mid-West Conference in Hannibal, Missouri. You can find out more it's webpage.

Plans for the International Cystinosis Foundation Conference in Europe at the Villa Camozzi in Ranica (Bergamo) Italy have been finalized. Complete information will be found in the forth coming Newsletter and on its webpage.

More News:
Dr. Thoene will continue to see patients. If you want to make an appointment with him, please call:
Dr. Jess Thoene, 312-223-6174.

Our hearfelt thanks to Tom Fencl for his continued gift of the Newsletter, printing and paper. Applications for the Lynn Potts Scholarship are still available. Please call Foundation Headquarters at 800-392-8458. It is with great saddness that I tell you Dale Witzenburg passed away. Dale was an adult and had many friends in the cystinosis community. His family can receive your cards and notes through the Foundation address, %Mr. and Mrs. Dale Witzenburg, we will forward them

As ever,

Jean Hobbs Hotz
President

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May 2000

Dear Friends,

Spring is here again. What a wonderful time of renewal it is for most of us. Spring gives us new hope as we see the flowers blooming, animals bringing forth their new born: the newborn lambs. bunnies, little birds leaving their nests. This is the time when we human beings also look for renewal in our own lives as we individually welcome the spring time. This will be a special spring of growth as we see the growth of the Cystinosis Foundations, extending into Europe. What a glorious time for families as we come together in Italy September 4,5,6. We will be coming together from all parts of the world for fellowship and to salute the strides made in research as our research scientists press for better treatments and pursue a cure for cystinosis.

The International Cystinosis Foundation Conference in Europe in Ranica, Italy, September 4,5,6 has been made possible by a grant from Sigma-Tau Pharmaceuticals, Inc.

The Cystinosis Foundation, New Jersey's Annual Spring Dinner Dance was once again, a wonderful evening for the 350 people in attendance. At the very center of the evening is the dreaded cystinosis, the adversary that brought them togther, but they are wrapped in mutual care, concern and love of the cystinosis community, and their stalwart dedication in support of the Cystinosis Research being conducted in the labs of Dr. Jess Thoene , Dr. Doris Trauner, and Dr. Minnie Sarwal.

Please, check the Newsletter and Web site for more news and pictures of the fundraisers. Dinny and Tim Binger of Madison, Wisconsin raised funds for research with "The Binger Splash", which was a swim and luncheon party. A fun time was had by all .,It was soooo cold outside. "Helping Hands, for Lesley". with Friends of Lesley Cogar, who lives in West Virginia People in the community who gave a "Helping Hand" to Lesley , received a cut out colored hand which had their name written on the hand and was placed in the window of a local bank. "Hot Air Balloon Rides". with Dan and Holly Reuter, of Minnessota, is becoming an Annual Affair, and certainly an event to remember.
"Ice Cream Social", is just one of the fundraiser held by Ken Heinemeyer Ken is Cody Becht's grandfather and lives in Wisconsin. If you are interested in obtaining cannisters to place in stores, or if you would like one to keep at home to collect your change , please contact Ken. Sophia Hobbs and Friends of Joshua, held a "Yard Sale", in California. Friends of Joshua contribute through ongoing craft sales and yard sales. Our heartfelt thanks to the dedicated parents, relatives and friends who gave so generously of their time and talents to help assure the success of these fundraisers.

The Foundation continues to have BreathAsure for distribution. The company provides their product free to us since the products' shelf life is past due. Its efficacy is not adversely affected. If you should call the Foundation's 800 number for this or any reason, please, speak slowly and clearly when giving your name and number. Please give your phone number and address twice as a favor to your listener, Thanks to Mack Maxwell, Jessie Coker, and Ken Heinemeyer for helping distribute the BreathAsure.

We are very grateful to Tom Fencil for donating the paper and printing of the Cystinosis Foundation Newsletter, and brochures. Our heartfelt thanks to Tom , always. Cystinosis is a global disorder, and so our Newsletters and Brochures are distributed world wide. If you are not on our mailing list please send an email or call the 800 number, leaving a message including your name, telephone number, and mailing address. If you would like your child's photo on Brochures just let us know and we will send a master copy to you. You can then take your photo and master copy and make copies of a photograph of your child on the Brochure. We suggest that you carry a Brochure with you when you travel during vacation. Amelia Douglas became ill on a trip and needed medical attention . Since cystinosis is so rare the doctor never heard of it, and Sylvia , her mother was having a difficult time with the doctor. She had a Brochure in her purse with the telephone number of a doctor who was familiar with cystinosis and Amelia., and gave the Brochure to the doctor.

Sarah Melang is scheduled for kidney transplantation May 10., in Seattle, Washington. Her mother Brenda will be the donor. Sarah is the recipient of the Cystinosis Foundation Humanatarian Award. Sarah and Brenda will receive your cards and notes at home. Please send them to: 2818 94th Avenue, NE Bellevue, WA 98004

Tom Melang, Sarah's brother, is home from the hospital and on dialysis. Tom is feeling fine and has returned to work. Tommy can receive your notes and cards at: 4214 W. LK #201 Sammish Prkwy Redmond, WA 98052

Rebeckah Palmer is undergoing chemotherapy for lymphoma and can receive cards and notes at home. Rebeckah designed one of the Notecards in our Notecard packs.
E5762-689th Ave., Menomonie Falls, WI 54751

Copies of "Educational Rights of Children with Cystinosis", by Philip Matthew Stinson, Sr., Esquire are available . In addition to the Special Consideration and Rights of Children with Cystinosis, Phil has a comprehensive list of Internet resources, for parents and children. The list includes lots of interesting and fun things for the kids, including pre-schoolers. If you would like to receive this information, please call the 800 number or e-mail your request to jd2hotz@qnis.net

It is with great saddness that I write to tell you that Lynn Potts has passsed away. Lynn was 27 years of age and a great advocate for the children with cystinosis , whom she cherished.

The Deanna Lynn Potts Scholarship Fund through the Foundation, has been established to help a student with cystinosis to attend college and pursue a career. Applications may be obtained by calling the Foundation's 800 number.

Candice Short will be greatly missed. Candice was 18 years of age and loved music. She lived in North Carolina with her parents Shirley and Carl Short Sr. , and her brother, Carl, Jr.

Ricardo Rico informed us that his daughter Romy passed away. Romy was 3 years of age and lived in Cuba. Our thoughts and love are with the families who lost their children to cystinosis. Lois Strous and her husband Bill, lost their son, Steve to cystinosis,. Lois is maintaining a Special Book commemorating the lives of individuals lost to cystinosis. Lois telephone number is 717-624-7757

Always yours,
Jean Hobbs Hotz
President

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January 2000

Dear Friends,

We are facing the Challenge of a new Century. While we are thankful for the progress of the past, we are ever mindful of the difficult work to be done in our pursuit of a cure for Cystinosis.

The great Cystinosis Researchers and their continued search for the building blocks necessary to effective treatment and pursuit of a cure bolster us as we face the challenges of the years ahead. In recent decades they have solved some important puzzles of cystinosis.

What caused cystinosis was a mystery in the early 1960’s, when studies of cystinosis were begun at NIH. We can list some of their achievements since that time:

   Defect in Cystinosis has been found
   Carriers can be detected
   Cystagon approved by FDA
   Gene for cystinosis isolated
   Eyedrop studies with cysteamine
   Carnator approved in injection form for dialysis by FDA

Dr. Minnie Sarwal and Dr. Salvatierra of Stanford Medical Center plan a protocol to transplant children without use of steroids. This will be the first steroid free transplant study within the USA. Stanford will be the leading Center for this approach.

March is just around the corner and with that we look forward to the Cystinosis Foundation of New Jersey Chapter’s annual Spring Dinner Dance. The brotherhood, camaraderie and tender love is really something to behold. At the very center is the dreaded Cystinosis; the adversary that brought them together, but they are wrapped in mutual care, concern and love for the Cystinosis community and their stalwart dedication in support of Cystinosis research. For further information about this great evening (March 18) which will benefit Cystinosis research, please call the Cystinosis Foundation of New Jersey Chapter at (973)785-9707.

March is just around the corner and with that we look forward to the Cystinosis Foundation of New Jersey Chapter’s annual Spring Dinner Dance. The brotherhood, camaraderie and tender love is really something to behold. At the very center is the dreaded Cystinosis; the adversary that brought them together, but they are wrapped in mutual care, concern and love for the Cystinosis community and their stalwart dedication in support of Cystinosis research. For further information about this great evening (March 18) which will benefit Cystinosis research, please call the Cystinosis Foundation of New Jersey Chapter at (973)785-9707.

The Foundation still has BreathAssure on hand for distribution. The company provides their product free to us since the product shelf life is past due. Its efficacy is not adversely affected. If you should call the Foundation 800 number for this or any other reason, please, speak slowly and clearly when giving your name or number. Give any phone number or address twice as a favor to your listener.

Rebeckah Palmer, daughter of Doug and Sandi Palmer is undergoing chemotherapy for lymphoma. Rebecca received a kidney transplant earlier this summer. Rebeckah can receive cards and notes at the family home: E 5762-689th Ave., Menomonie, WI 54751.

Our heartfelt thanks to Tom Fencil for printing the Cystinosis Foundation newsletter. Unfortunately the Post Office goofed and some newsletters arrived smeared with ink on the front and back pages. Call the Foundation (800)392-8458 if you need a replacement.

The year 2000 will be the Cystinosis Foundation Conference year. To serve the Cystinosis community the Foundation will sponsor four Cystinosis conferences. The conference for the east in Waterville, New Hampshire will be co-chaired by Colleen and Jack Hammond. Co-chairs of the New Orleans conference are Cheri Friend and Frankie McGinnis. It was tentatively planned for August but another date will soon be set because we are advised New Orleans is uncomfortable in August. The Midwest Conference will be 40 miles from St. Louis. Dates to be announced later. Terry and Barbara Tachannen are co-chairs for this Midwest Conference. The first International Cystinosis Foundation Conference in Europe will be held September 4-6 at Instituto Di Ricerche Farmacologiche “Mario Negri” in Ranica, Italy. The Institute is a short drive from Milan, Italy.

For those with Internet access, further details will be posted to our web site: www.cystinosis.com

Best wishes for the coming year,

Jean Hobbs Hotz,
President

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December 1999

Dear Friends,

Dr. Jess Thoene, Medical Advisor and recepient of a major Cystinosis Foundation Grant will have his lab installed in Tulane University the first of the year. Dr. Thoene looks forward to the move and is assured that the Cystinosis research will proceed as rapidly as possible. He will be seeing cystinosis patients at Tulane. If you want to see Dr. Thoene you may contact him at Tulane or call the Foundation's 800 number. He will send his telephone number to us as soon as he is settled.

We are excited about the Foundation's AUCTION on the INTERNET Enclosed is a flyer with information on how you and your friends can be a part of this interesting fundraiser. Funds raised from the AUCTION will help the Foundation support the research of Dr. Thoene. Thanks to Frank Ritchie for arranging the CYSTINOSIS FOUNDATION AUCTION on the INTERNET.

Our latest Fun Fundraiser was conducted by Ken Heinemeyer, grandfather of Cody Becht. Ken is one of our pioneer fundraisers His latest fundraiser was a Bowling Tournament. Fun was had by all and the Cystinosis Foundation Research Fund is richer for Ken's Fundraiser. Ken is very inventive We will be including some of his Fundraisers in our Fundraising Packet. If you are interested in raising funds for Dr. Thoene or Dr. Doris Trauner's research, please call the office (800) 392-8458 for a Fundraising Packet.

Ruth Ann Ahnen had her R&R after the New York Marathon and is ready to help train anyone who is interested in running. Ruth Ann trained her friend Sarah Yancey and they ran the Marathon for Katie Ahnen They ran as KATIE'S TEAM, and brought attention to Cystinosis. Thanks, Ruth Ann and Sarah. You made a GREAT TEAM. Ruth Ann is anxious for more TEAMS to run in the Marathon. They were sponsored by friends and relatives with all proceeds going to Cystinosis Research.

We need a Roster of parents who are willing to speak to other parents about their child's kidney transplant Also, a Roster of adults willing to talk to other adults facing transplantation. For those of you who are interested, will you please send a note to Headquarters giving us permission to use your name? If you prefer, you may e-mail permission.

The Millenium will be the year that the Cystinosis Foundation reaches out to bring more Conferences to the Cystinosis Community.

Conference for the year 2000 will be held in New Hampshire. Colleen and Jack Hammond will host this Conference You will be getting information from them at a later date. By all indications it will be a wonderful Conference for the families.

There will also be a Conference in New Orleans, Louisiana. Cheri Friend and Frankie McGhinnis will be working on the New Orlean's Conference. They hope to share the "Conference Feeling", with newcomers.

We are very greatful to Lonnie and Joan Hohl of Iowa for overseeing the Mid-west Conferences. Joan and Lonnie have contributed endlessly to the success of these Annual Mid-west Conferences. We also thank Reverend and Mrs. Robert Douglas, Bill and Darla Croci, Don and Doretta Hoffman,Candy and Don Wagner for also hosting conferences in the Mid-west Terry and Barbara Tschannen will host a Conference in the Midwest next year. It will be located in Missouri.

There are no country boundaries on cystinosis. In the past the Cystinosis Foundation Conferences have been held alternately on the east coast and west coast. This was done for testing of the volunteers, on the west coast, and for the National Institutes of Health Connection in the east. These reasons are no longer valid, and we hope to reach more of the Cystinosis Community. at future Conferences

We are working towards a Conference in Europe.

We want to remind you of the change of distributor for Cystagon from Chronimed to PRO-CARE . If you have not signed the form from Chronimed please do so, to insure no disruption of service.

The cast on Keri Hohl's leg will be off in a week. Keri, daughter of Lonnie and Joan had surgery on her legs. You can send cards to Keri at:

Lonnie Hohl Realty Specialists, Inc.
4630 Singing Hills Blvd
Sioux City IA 51106

With my best wishes,

Jean Hobbs Hotz President

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