Yes, the Egglands are heading west to ski again for Cystinosis Research! As many of you know (thanks to this fundraiser and your annual email from us!), Carson has a rare condition called Cystinosis, a rare, incurable (so far....read below!) disease that affects about 500 people in the US and 2,000 worldwide.
Thanks to your support over the years, there was a MAJOR announcment in January. The Cystinosis Research Foundation has received approval from the FDA to begin human clinical trials for stem cell and gene therapy treatment for patients with cystinosis! This approval from the FDA brings us closer than ever to what we believe will be a cure for cystinosis and to answering the wish of all adults and children with cystinosis, “to have their disease go away forever.”
Carson is grateful that his condition is extremely mild, and his prognosis continues to be great. However, others like Henry (aka "Hank"), have a longer road ahead. Research is coming such a long ways in a short amount of time thanks in large part to Hank's family and their fundraising efforts. We feel forturnate to play a small role in finding a cure for this disease.
Thank you for supporting our family's race to do what we can to find a cure for this disease. All donations are tax deductible and will be used to support Cystinosis research. Last year your donations of nearly $11,000 helped Henry's family write a total check for $200,000 to the Cystinosis Research Foundation.
Thank you for for your love and support!
P.S. If you would like to write a check instead of donate online, simply address the check to "24 Hours for Hank" and mail to Egglands, 706 North St, Decorah, IA 52101 and we'll make sure to get it to the right place.
To learn more about Henry and Cystinosis please visit www.24hoursforhank.org