I am the founder of the Clara Lemarr Foundation. I was diagnosed with the rare genetic disorder-Ehlers Danlos Syndrome, last year, at the age of 13. I decided that I wanted to ensure other kids did not suffer as long as I did. The Foundation was established in August 2015, as a 501c3. Our goal is to raise awareness, funding, and support for children and families suffering from EDS and associated comorbidities. We hold an annual gala called the Zebra Ball for fundraising and awareness, we sponsor Zebra Camp, where this year we had 18 other EDS children attend for free and participate in safe camping. We also are working with the school and medical communities on education.
I’m a Patient Leader