There are a few wonderful support groups and organizations that we have turned to as a family dealing with Cystinosis (see links below). We are honored to be working closely with an organization that has become really special to us this year. The Cystinosis Research Foundation is the world leader raising money for the research and better treatments of this disease that afflicts both of our children and others around the globe.
When Jenna and Patrick’s Foundation of Hope was created, we quickly learned that the Cystinosis Research Foundation was years ahead of us in funding the study of Cystinosis. They are currently funding cutting edge research by dedicated and knowledgeable doctors who are studying this disease (see research tab). It was clear we didn’t need to reinvent the wheel.
We are proud to announce that 100% of the funds raised for Jenna and Patrick’s Foundation of Hope will be passed along to the Cystinosis Research Foundation. Each year at the Natalie’s Wish benefit, we will present a check to this dedicated organization, knowing that ONE HUNDRED PERCENT of the monies you’ve so generously donated will be used for the research and treatments—and perhaps someday a cure, for Cystinosis.