Kacy Supporters Helped Take a Step Toward a Cure

 On Sunday May 5th the sun was out and we had the largest crowd yet as more than 400 runners, walkers, bikers and dogs turned out to support Kacy Wyman and the Cystinosis Research Network.  Contributions are still coming in and we are grateful and proud to share that our community of supporters has raised near $30,000 for the Cystinosis Research Network. These funds will help with continued research projects to improve the quality of life for those dealing with Cystinosis and other rare diseases, and ultimately a cure!

The last 12 months have been exciting for the Cystinosis community and Kacy. Recently the eye drops that Kacy takes each hour have been FDA approved, meaning the drops are now covered by insurance. This makes them more affordable and accessible for many families. Also, a slow release (12 hour) drug called Procysbi is expected to be available this year allowing kids (and their parents) with Cystinosis to hopefully get a full night sleep for the first time in many years. There is still much work to be done to find a cure and our fundraising is having an impact for Cystinosis and other rare diseases. Kacy's mom Jen Wyman continues to be active with the Cystinosis Research Network where the feeling is that these two advancements should have a positive impact on kids dealing with the disease.

The fun run/walk, like anything worthwhile, could not have been such a success without the help of so many people. Michelle & John Kelly, Kristin Prebay, and Jeff & Kathy Abrash have helped every year with food. Carrie Olds and Suzanne Neff have been stalwarts rounding up many route volunteers. Lori & Hadley Horton, Mike Neff, and Nona Cleary pitched in where needed every year as well.  This year we are thankful to Kristin Cullen for arranging the donation of T-shirts. The list goes on….our generous sponsors… colleagues at The Center…Kacy’s swim club Atlantis……..all of these “little things” are not little….they add up to make a great event and we thank you all!

The CRN Fun Run/Walk has become a staple in our community. It is an important day for Kacy and for finding a cure. But as I (Kacy's dad) like to say, more than anything, the day is about HOPE. When you choose HOPE anything is possible. The support you all provide year after year gives us hope….hope for better treatments….hope for a cure…. Thank you!