Fundraisers, challenges planned for EDS Awareness Month
May is the month to share stories, promote education
May is the month for the global Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) community to team up to raise awareness and share experiences.
In the U.S., The Ehlers-Danlos Society proposes a number of ways to get involved, including participating in walks and fundraising events, illuminating landmark buildings, sharing stories on social media, and making sure healthcare teams are aware of the society’s medical education program, EDS ECHO.
“This year, our goal is to raise $100,000 in May—funding groundbreaking research, education for healthcare professionals, and critical support for those impacted worldwide,” the organization says on its awareness month webpage. “Let’s make an impact together. Whether you walk, roll, share your story, or fundraise, every act of awareness fuels change.”
EDS encompasses a group of genetic disorders that affect the connective tissues, resulting in symptoms like unusually flexible joints and fragile, stretchy skin. People with HSD also have joints with a greater than normal range of motion.
Walk and Roll challenge
Supporters are invited to participate in the organization’s Walk and Roll challenge, in which participants walk or run outdoors or on a treadmill, or use a bike, wheelchair, or any adaptive equipment to cover a distance of their choice in May.
Those who raise more than $60 will receive prizes according to the amount raised. Prizes include T-shirts, baseball caps, tote bags, mugs, and name recognition for anyone who raises more than $450.
Anyone who wants to participate in a challenge can request a free fundraising pack with tips, materials, and ideas from the society.
EDS Echo, a series of virtual education programs for healthcare professionals and patient advocates, has a team participating in the Walk and Roll challenge. Under the banner “All Move, All Together,” the team’s goal is to collectively cover 2,000 km (about 1,242 miles) and raise $10,000 for the society.
For its Light it Up challenge, the organization is asking supporters to request that local buildings of interest be lit in orange for EDS and HSD on May 4 or another day during the month, and red for vascular EDS, the most severe EDS type that affects blood vessels, on May 16.
The organization provides templates for email requests and encourages people to take photos of lit-up buildings and share them on social media using the hashtags #MyEDSChallenge, #MyHSDChallenge, and on May 16, #REDS4VEDS.
So far, requests have been made to light a number of buildings in the U.S., Canada, Guatemala, Italy, and the Netherlands.
In the U.S. or Canada, supporters may request that local governments proclaim May as EDS and HSD month. The society provides links and tips on contacting local officials to request a formal designation.
A Knowledge Challenge page on the society’s website will highlight educational resources each day throughout the month for people to learn more about EDS and HSD and share what they learn on social media. There are also pages with challenges for raising awareness through various channels and for sharing each of the organization’s 31 daily themes for the month on social media.
Those participating in the challenges and using social media to raise awareness for EDS and HSD are asked to use the initiative’s hashtags.
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