Thank you to everyone who
volunteered and came out to enjoy Jack's Family Fun Day. The weather was perfect and
the children had so much fun swimming, playing, riding ponies and
eating! This year we raised
over $16, 240 for Cystinosis Research Network with a grand total of over $56,000 in the four years we have held this event.
It is our wish that this money will make a
difference in Jack's life and others living with Cystinosis. Thank you to all....this
truly is a community event!
About Family Fun Day
One of our 7 year-old residents, Jack Greeley, suffers from cystinosis, a rare disease that primarily affects children. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. It is estimated that 2,000 individuals worldwide have cystinosis. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine and require kidney transplants for survival. Cystinosis also causes complications in other organs of the body. Jack takes some 6 medications ever 6 hours around the clock, every day to stay alive and will eventually have to take hourly eye drops while awake.
We are a group of friends of the family directly affected by this disease who want to make a difference for our friend Jack and for others who have cystinosis. Family Fun Day is put together by many members of our community and with many contributions by the businesses in the area. This event has truly brought our community together. The money we raise goes to Cystinosis Research Network (CRN), an all-volunteer nationally recognized 501(c)(3) not-for-profit organization that directly funds medical research for cystinosis.
The last three Jack's Family Fun Days have raised almost $40,000. CRN is sponsoring two new research studies this year and the money from the three Jack's Family Fun Days combined will fund one of those studies for more than a year. Thus, the money raised is going directly toward our goal, to help our friend Jack and others with cystinosis to find better treatment and ultimately a cure for their rare disease.Thank you to all the volunteers who have helped with past Jack's Family Fun Days and to all who are helping to make this year possible. Also, thank you to all the businesses and companies who have made donations for raffle/auction prizes, are sponsoring events, or donating their time to help out with this event. We could not do this without all of you! Please see link on side for list of donors. A special thank you to Tamarak Day Camp and Country School for donating for the fourth year their beautiful location to hold our event.