The recent 1998 Annual Cystinosis Conference in Ann Arbor, MI was our first experience at an international conference. Our family includes Jeff and Sharon, parents of two girls; Kelly and Lauren. Kelly is 10 years old and was diagnosed with cystinosis at 16 months and started phosphocysteamine at 18 months. She now takes Cystagon capsules, along with some of the other supplementary medicines that yuo are all familiar with. Kelly's sister, Lauren, is 8 years old. Kelly is followed by a pediatric nephrologist at Mayo Clinic, Dr. Dawn S. Milliner and a pediatric ophthalmologist, Dr. Monte Mills at the University of Wisconsin in Madison, WI. We are so grateful to all of the wonderful doctors who have cared for Kelly.

Three years ago, we did attend a Midwest gathering of families in Davenport, IA. It was great to see so many of the Midwestern families again. Jeff and I instantly felt at ease talking with everyone again. We were equally comfortable in talking with all of the families that were new to us at the conference in Ann Arbor. After seeing so many pictures in the Cystinosis newsletter, it was wonderful to meet people in person. It was very helpful to network with other parents and to share ideas together. It was particularly helpful to learn that many of the children have "flat feet" and this could lead to knee and other orthopedic problems. This was information that we may not have learned about if we did not have other parents to share information. So, Kelly will be seeing a podiatrist in a couple of weeks to get some recommendations, just in time for "back to school" shoe shopping.

There are so many details to consider when managng a condition, like cystinosis, that it is really a continuing learning process. And each new stage of development brings its own challenges. Believe me, I listened carefully to those parents with adolescents.

Another reason for attending our first annual conference was to have an opportunity to personally thank all of the cystinosis researchers. It was my goal to seek out as many of the researchers as possible and extend my personal thanks for all that has been accomplished.

I was very happy to hae the opportunity to talk with many of the researchers. Jeff and I found all of the sessions to be very informative and helpful. We were so pleased to listen to the international speakers.

I will always remember the slide of Dr. Antignac and her staff, on their Paris roof top, with the Eiffel Tower in the background. It was symbolic of all the wonderful people within the U.S. and abroad, who are willing to research rare diseases and we are forever grateful.

So, all things considered, the annual conference was a tremendous success for our family. And, according to Kelly, the highlights of the conference include: eating pizza, swimming, going to the Children's Museum, the picnic and more swimming.

We look forward to future times together with our new friends through the Cystinosis Foundation.

Sharon Bryant, La Cross, WI

I have recently attended the Cystinosis Conference in Ann Arbor, Michigan which took place from July 2nd through to July 4th. As a teen with Cystinosis, it gave me a chance to meet other teens that had cystinosis or had siblings with the disease.

I also found it be very informative and I learned many ways of dealing with such problems as the bad breath associated with the Cystagon and how to deal with any emotional anguish that may be felt about the disease.

I would especially like to thank Miss Glaize for allowing the teens to have their own little meeting on Friday morning, I found this meeting to be comedic and a refreshing look at cystinosis for the patients and siblings.

Dave Clark, Canada

The second conference is like going home. You see everyone from the year before and see how good they look. You don't have to explain anything. You don't have to explain what is wrong with your child.

Everyone is in the same place, or has been in your place or will be there.

It is the most comfortable place to be. It is such a relief. There is immediate bonding with everyone there. Our doctor thinks we are lucky to have an organization, because so many diseases do not have organizations, and we find the cutting edge at conferences.

Frankie McGinnis, South Carolina