Making A Difference
On the
evening of May 30, 2002 in Newport Beach, California, Jeff and Nancy Stack,
parents of Alexandra, age 12 and Natalie, age 11 (Cystinosis), hosted "The
Faces of Cystinosis" reception at The Clubhouse at Pelican Hill, Newport Beach,
California. A short video titled "The Faces of Cystinosis" was shown to the 150
guests. Nancy shared information on Cystinosis and its affects on Natalie and
her family. Jeff discussed the critical need for funding research for rare
diseases like Cystinosis. Dr. Jess Thoene, Director of the Tulane School of
Medicine, Hayward Genetics Center was the honored guest speaker.
Dr. Thoene has been the Chairman of the
National Organization of Rare Diseases, an organization dedicated to supporting
the millions of people born with rare diseases like Cystinosis. For the past 25
years, Dr. Thoene has been involved in Cystinosis research. His efforts helped
bring Cystagon, the only medication available for Cystinosis patients, to
market.
Dr. Thoene is currently searching
for a more definitive treatment for Cystinosis through gene therapy. His
dedication and commitment to finding the cure for Cystinosis and its
complications, has been an invaluable gift of hope to the Cystinosis community.
After Dr. Thoene's outstanding presentation, the guests were able to ask
questions about his research and Cystinosis. Also in attendance was Dr. Dohil,
a gastrointerologist from the University of California, San Diego.
The event was extremely successful. Not
only were the people in attendance educated about Cystinosis and the research
to find effective treatments and a cure, but over $150,000 was raised for
research! Dr. Thoene has already received a $100,000 grant to pursue his gene
therapy related research.
Many
thanks go to Jeff and Nancy Stack for organizing the event and underwriting its
cost. Thank you to Dr. Thoene for attending and sharing his knowledge of
Cystinosis. Thank you also to Dr. Dohil for attending and for his continued
interest in Cystinosis patients. And of course, many thanks to the people
attending the reception and to all those who contributed to such an
extraordinary event. The outpouring of support and interest made the evening an
exceptional night.
It will take hours of
research to find better treatments and a cure for cystinosis. Those hours will
take dollars to fund the researchers. Thank you to all who have contributed
their time and finances to cystinosis research. You are all the "Faces of
Cystinosis."