Meet Our Community

We have designed this section as a place to share stories about the children and young adults with cystinosis.  

The Cystinosis Research Foundation family is working in a variety of amazing ways to support cystinosis research.  As we move closer to the reality of a slow-release medicine for our children, we are united in our commitment to fund researchers and scientists in our quest to find a cure. 

Your stories and photos along with your fundraising ideas and efforts are an inspiration to us all.  We encourage you to share them with us as we continue our journey towards the cure.  Please contact us by completing the contact us form in the How to Help section of our web site.

The outpouring of love, concern and support for the cystinosis community is expanding, together we are sharing this journey of hope and the power of a wish.



Joshua was born on November 14, 2006, a healthy 7.0 lbs.
Nicole Hall was diagnosed with cystinosis in August 2007, two months before her 2nd birthday.

Gabrielle was born on October 21, 2007. She gained weight quickly after her birth and was in the 90th percentile for height and weight until she was nine months old.

Bailey was diagnosed with Cystinosis when he was 18 months old.
was diagnosed with Cystinosis when she was 15 months old.
Our son, Joel, who turned three in October, was diagnosed with cystinosis in March, 2007.

In September, we will celebrate a huge milestone, the fifth birthday of our youngest daughter, Tina Marie.
2005 did not turn out like I thought it would.
Henry was 16 months old when he was diagnosed with Cystinosis.

Kelsey Doering is 17 and lives next door to 2-year-old Holt Grier, who has been diagnosed with Cystinosis.
Hi! My name is Jenna McCall Partington and I am two years old.

Heather is almost 15 years old and has cystinosis.