WORKING ON A CURE FOR CYSTINOSIS
The Cystinosis Research Foundation’s mission is two-fold and focused: to find better treatments and a cure for cystinosis. Funding quality research studies remains a priority and is an ongoing process.
THE STORY OF NATALIE'S WISH AND CRF
In February 2003, on the eve of Natalie’s 12th birthday, Natalie made a birthday wish that no child should ever have to make.
After leaving a doctor’s appointment, we stopped to have lunch at a local restaurant. While discussing plans for her birthday party, I asked Natalie if she had thought about making a birthday wish. Natalie said she did not have a wish because she wasn’t sure what type of wish she should make. She asked if her wish had to be a wish that would come true. Next, Natalie pulled a napkin from the holder on the table and scribbled something on the napkin with the crayon she was using. Then, she folded the napkin and put it in her pocket.
We finished lunch and as we were walking to the car, I asked to see the napkin. At first hesitant, she reached into her pocket and handed me the napkin. I unfolded it and in purple crayon she had scribbled, “to have my disease go away forever.” With tears in my eyes and holding her wish in my hand Natalie whispered, “It’s okay Mom – I’ll be alright.”
Natalie’s compelling wish was the catalyst for us to act. Those seven words provided the impetus for us to create the Cystinosis Research Foundation. We knew at that moment that we needed to make every effort to make Natalie’s wish – and the wish of others with cystinosis – become a reality. That year we established the Cystinosis Research Foundation with the express mission to support cystinosis research. Since that time, our extraordinary community of friends and family has helped make Natalie’s wish move closer to reality. The CRF is committed to find better treatments for cystinosis and to find a cure for this devastating disease.
Maybe add CRF Video of Natalie
