Virtual Walks, Other Activities to Spotlight Scleroderma Awareness Month

Virtual Walks, Other Activities to Spotlight Scleroderma Awareness Month
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Social distancing might thin the crowds, but it won’t stop the walks, runs, and other activities planned throughout June, in support of Scleroderma Awareness Month.

The events, coordinated annually by the Scleroderma Foundation, aim to raise funds and awareness, as well as to encourage participation in patient advocacy.

The foundation is sponsoring a series of virtual fundraising walks in cities across the U.S., as part of the Stepping Out campaign. Participants are encouraged to walk, run, cycle, or partake in any other fun activity, while engaging with others via social media. A complete list of events, which extend until October, can be found here. For more information, call the foundation at (800) 722-4673, or send an email to [email protected].

Virtual walks will also take place in Canada, organized by Scleroderma Canada. Similar to the events in the U.S., participants north of the border are encouraged to walk or engage in other fun activities, while posting to social media using the hashtag #scwalks2020. Participants can also email photos and/or videos of their at-home activities to [email protected] for a chance to win prizes.

Complementary to these activities, Scleroderma Aware offers a variety of social media tools and ideas for fundraising and boosting awareness via an online toolkit. Profile picture frames and cover photos are among the existing resources, with suggestions to host online game nights, movie screenings, and neighborhood concerts as fundraisers and opportunities to talk to others about scleroderma.

To further empower patient advocacy on the personal level, the Scleroderma Foundation has made a number of online tools to help people get involved. These include ways to tell personal stories of living with scleroderma, 30 suggestions on how to help raise awareness — which go from becoming a foundation member to sending information to the doctor’s office so other patients may benefit — and wearable items with the foundation’s logo.

People can also make donations to support nationwide programs, education events, and an annual grant program.

In addition, the foundation has designated Monday, June 29, a National Day of Action to call upon Congress to support bills important to the scleroderma community. Registration for the event is free and includes a 45-minute training video. June 29 is also World Scleroderma Day, a day in which all are encouraged to help spread the word by using the hashtags #protectyourselftoprotectus and #sclerosmile.

Estimates of the number of scleroderma patients in the U.S. vary from 75,000 to 100,000, according to the American College of Rheumatology, to 300,000 individuals, according to the Scleroderma Foundation.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
Total Posts: 27
José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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