It started at a wedding - and a bottle
of port was involved. Two long-time friends, Mick and Ann, got married after a
'lengthy' courtship and there we met Deirdre and Enda. Mick and Des were in
college together many years previously and Mick, Des and Enda shared a house
some years later. Anne Marie and Deirdre, at one time, also shared an
apartment. Then there was marriage, children and less contact for a while and
we were busy. At the wedding, Deirdre said she would organise a dinner party
and some months later we joined them, and Mick and Ann.
We sat, ate and talked like it was 12
years previously and then Deirdre brought out a bottle of port. At 1am, Des
said we should probably go home. Five minutes later it was 3am - that port was
strong. (We usually only see 3am to administer Cystagon!). We were asked about
Luke and cystinosis and we told them about the research going on. We told them
about how the Maguire family, following a discussion with Don Cairns at the
Paris conference, came home and raised 15,000 euro at an auction to help his
research. We talked about how hard it was, as parents, to become involved in
fundraising because we were asking for our own children. Through some of this
conversation, Mick had a little nap at the table. This was usually Des's party
piece. Mick snapped awake and asked us to tell him again about the research. He
said they could organise something. Deirdre thought she might be able to get a
good venue for another event but they decided to do the women's mini marathon
as a start (even the men). And I said they should wait until tomorrow until
that port wore off.
Women's Mini
Marathon
But they were true to
their word. On June 2nd, 14 people walked and ran the Women's 10k Mini Marathon
(two of them were men!). It was a lovely sunny day and it was great fun. Over
30,000 women annually run this event and millions of euro are raised each year
for charities. We chatted as we walked and it didn't feel like 10k. Sonia O'
Sullivan won and a couple of hours after she passed the finishing line, our
group all met in a pub to celebrate our achievement. Sponsorship cards had been
given to friends and work colleagues and over 6,000 euro was raised. Most of us
had never done anything like this before, but everyone said s/he would be back
again next year. The athletes were as
follows:
Susanne Alseimher, Mary Carey,
Des (aka Desiree) Hennelly, Mary Kelly-Hillhouse, Ann Kelsey, Anne Marie
O'Dowd, Evelyn O'Dowd, Deirdre Somers, Mick (aka Michelle) Swift.
Thank you to all to the athletes, all who
took sponsorship cards and all who supported us so generously.
Irish Music Concert
And then, on 18th June, 2003,
organised by Mick and Ann, we had a traditional Irish music concert. Mick's
brother, Declan, helped organise the venue - The Village - which was donated
free of charge. Declan also helped to arrange posters and tickets. The newly
formed Cystinosis Foundation Ireland committee and friends worked tirelessly
selling tickets and some of them even got their photos on the national
newspapers. Emails flew around the country, posters went up and friends were
drawn in from everywhere. Ann and Mick knew a top class musician, Emer Mayock,
from County Mayo, and she organised a number of other musicians. Emer Mayock
plays with a band called the Afro Celts and with her own band. Her music is
critically acclaimed. On the night, we had Cathy Jordan from Dervish who has
the voice of a star. We had members of the up-and-coming band, Slide, Eamonn de
Barra, Mick Broderick, Cormac de Barra, Peter Browne and Shane McGowan and
others. The music was electric and the venue let them play for four hours.
Oscar-nominated actor, Stephen Rea (The Crying Game) even turned up on the
night and we had a raffle. We raised over 5,000 euro in ticket sales and
another 5,000 euro in donations.
Thank you
to Emer and all the musicians involved. Thank you to Declan, the extended
Maguire, O'Cathasaigh and O'Dowd-Hennelly families, the friends who email
friends and brought more on the night, put up posters and sold the tickets, Ann
& Mary Maguire arranged the raffle and the prizes (it raised 800 euro),
those who looked after our children on the night.
Stock
Exchange
Thanks to Deirdre and
Enda and the bottle of port. Deirdre has arranged for us to use the market
floor of the Irish Stock Exchange for another event and we have to finally
decide on what we'll do there.
Finally,
thanks to Ann and Mick for everything - and for starting it all by getting
married.
Anne Marie O'Dowd