Clara Lemarr

Patient Leader

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.


Best in Show: Facebook


Best in Show: Facebook Rookie of the Year

At the age of 13, Clara was diagnosed EDS. Instead of it causing her to give up, her first reaction was that she wanted to set up a foundation to help other children with this disease get help. She set up the Clara Lemarr Foundation and runs it as the CEO. She held a Zebra Camp, 3 day 4 night stay for free, where they were able to enjoy camping.  — Candi

She started with a small plan to help children who are suffering from EDS. Through her Facebook page she has reached more than 10,000 views, over 500+ likes, and has reached countries around the world. She is recognized nationally for her work on helping others and she started it all with a Facebook page. Fabulous use of technology for a cause.  — Candi

Clara Lemarr

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