EDS COMMUNITY COLLABORATIVE NEWS
A band of zebras collecting insights to connect the dots of invisible illness.
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EDS AWARENESS
CAMPAIGN THIS MAY
Play it Forward!
Creating a community playlist with Care-e-oke
Dropping Beats, Lifting Spirits:
EDS Care-e-oke Connects Us!
Tired of not feeling heard? This May, let's collaborate to raise awareness around the globe for Ehlers-Danlos syndrome (EDS) patients everywhere. It's simple to join by adding your favorite fight song to the community playlist on Spotify. Let's make a mixtape with a mission and elevate the noise level on what it's like to be a zebra.
The EDS Care-E-Oke Playlist with a Purpose
How To Join The Party
Step 1: Login to Spotify (free or paid account)
Step 2: Search for your fav inspo or fight song
Step 3: Click the three dots near song title, select add to playlist
Step 4: Search and select "EDS Care-e-oke Playlist 2024"
MAKE A DIFFERENCE
FOR EDS
Want to contribute to the future of EDS awareness, research and answers but don't know how? You can choose to learn and donate to several nonprofits working on various projects to support us that need our contributions to keep looking for better diagnostics and treatments - and maybe one day a cure.
ways to join the movement...
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NEW! Limited time - Get your Care-e-oke 2024 Play It Forward tshirt (order here before 5/21/24) thats a fundraiser supporting the nonprofit Chronic Pain Partners to wear your support (shown left available in multiple options).
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Share the news of the upcoming EDS documentary film, Complicated by Open Eye Pictures the studio who previously brought the challenges of Lyme disease to the masses with the award-winning film Under Our Skin. Spread the word or send a them a gift directly to support the volunteers who produced this film. The films helps families losing their children from false accusations of child abuse with EDS symptoms and injuries misunderstood by doctors.
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Join the scientific efforts for hEDS diagnostic testing with expert researchers at the MUSC Norris Lab where Dr. Cortney Gensemer works toward identifying the gene(s) that will lead to an simple blood test for faster accurate diagnosis of hypermobility. Learn more at The Norris Lab or one-click to donate directly to their EDS research. Have you shared your DNA sample yet to be part of the search?
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Help families living with children with EDS by supporting their parents with The Coalition Against Pediatric Pain (TCAPP) by contributing time or resources to their education programs. Support their Send a Smile program that sends special mail gifts to kids with EDS during hospitals stays through this direct one-click to donate.
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Give to power the knowledge and content growing on EDS and comorbidities by joining as a writer, editor or supporting a fundraiser for the Chronic Pain Partner's volunteer media team coffee fund. They're quietly curating content and hosting webinars with experts for EDS Awareness newsletter and more. A gift is a small way to say thanks.
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Join in supporting medical research with expert doctors searching for patterns in their patients and designing solutions through the Bobby Jones Chiari Syringomyelia Foundation via this one-click to donate directly. They recently supported Dr. Fraser's Henderson et al., research on craniocervical instability surgical outcomes published in early 2024.
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Check out our list of other EDS supporting nonprofits (alphabetically listed) so you can choose where you want give with several options to give back. Please also share any additional organizations not yet listed for a more inclusive list to meet the broad needs of the community. We pride ourselves on collecting and connecting patients with information and resources. Be sure to check Charity Navigator to ensure your trust where your resources are going first. Question, comments or additions to the list, email us at edssharenews@gmail.com.
