Let us start with saying, that we think our story has just begun and we have many chapters still to be written.  Today, we start with a story of one child, Drew, and his family’s response to his diagnoses of LCA-CRX.  We hope that the rest of the story is filled with the stories of the families that have joined us along the way in proactively creating a happy ending - A cure for CRX blindness. 

 

In late 2016, when Drew was about 3 months old, he started showing signs of having problems with his eyes.  We originally believed that he had an eye muscle problem; however, after several months of appointments, tests, and waiting, it turned out to be a more severe problem.  We were informed that Drew had Leber's Congenital Amaurosis, a retinal disease that will leave him legally blind.  Like many of families, the diagnosis led to a fury of research into the disease, the many types of LCA and the potential for a future cure through the ever-developing research.  After genetic testing and learning that Drew possessed the CRX mutation, we quickly went to work reviewing the many LCA patient organizations.   We learned that there was a need for patient organization for CRX families whose aim was to reach other families affected by LCA-CRX and to fundraise for research.

 

We hope that the next chapter in the story includes the expansion of our Board of Directors to include additional family members of CRX patients.  Together, we can work together to improve the lives of patients with CRX blindness and to support the development of treatments and cure.