The Clara Lemarr foundation was established to help provide awareness and education for the community for Ehler's Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and associated issues with these two genetic disorders such as Mast Cell Activation. We do not provide medical advice and any information on our page should be reviewed with your own health care team before taking any action.
We were founded in August 2015, after our Founder-Clara Lemarr was diagnosed with POTS & EDS. She is an incredible young lady whose goal was to ensure other children did not suffer for as many years as she did before diagnosis.
We do not have any paid employees, everyone is volunteer only, so therefore unlike other foundations, 100% of the funds received goes right back out to help EDS patients, spread awareness, and work in the community.
Clara does do speaking engagements, but we ask that you email us your requests to ClaraLemarrFoundation@gmail.com with your requests. Please keep in mind depending on her health and her very busy schedule, she does her best to acomodate everyone, but sometimes she is not available.
We have three large activities happening this year:
Zebra Ball-Black Tie Gala and concert that will be used as our number one fundraising event to help support the other two initiatives-the EDS Conference scholarship program & Zebra Camp.
EDS Conference scholarships are all based on how much funding we have available at the conference, but we will make as many scholarships available that we can.
Zebra Camp is a 3 night-4 day camp that will be held in Spotsylvania, VA, August 4-7, 2016. It will be open this year for 20 participants. All counseling staff will be trained on EDS and have have background checks.
We hope to grow all the programs over the years so that we are able to reach as many people as possible.
We are also in the midst of forming the CLF Parent Advisory Board-open to parents of children whom have been diagnosed with EDS that are under the age of 18. This group will assist in determining what the Foundation will function on in the community for awareness prorgrams.
We will also be establishing a CLF Junior Advisory Board for those who have EDS 18 years of age and under, who want to work directly with Clara on community service and awareness programs.
We are very excited about all of these opportunities and if you would like more information, please send us an email with the topic highlighted in the subject line, and stayed tuned for some AWESOME announcements coming after APRIL 15, 2016.
Candi Lemarr, CMO Clara Lemarr Foundation