‘Stepping Out to Cure Scleroderma’ Events Run Through June

The Scleroderma Foundation invites people to participate in Stepping Out to Cure Scleroderma, a combination of outdoor and virtual fundraising events to support patients and their families, and research into potentially curative treatments during scleroderma‘s awareness month.

Local Scleroderma Foundation chapters organized group Stepping Out runs and walks in past years. But due to the ongoing COVID-19 pandemic, this year’s fundraising will again take place largely online, often via live-streams. Participants are encouraged to engage in individual outdoor activities, like walks and runs, as they can.

People can share their experiences through social media, connecting with others on platforms of their choice by using the #SteppingOut and #StompOutScleroderma hashtags.

Walk/run events — overwhelmingly virtual — are scheduled across the United States throughout June, which is Scleroderma Awareness Month. Two such events are planned for June 29, which marks World Scleroderma Awareness Day.

Local chapters still host each event this year

“When you walk, you support the Scleroderma Foundation and the hundreds of thousands of adults and children who cope with this disease every day,” the group stated.

Not all events concern athletics or live-streaming. The Southern California Scleroderma Foundation chapter, for instance, is hosting an “icy hands” challenge, meant to allow people without scleroderma to briefly (for 30 seconds) experience Raynaud’s phenomenon. In Raynaud’s, excessive collagen growth narrows the small blood vessels of the fingers and toes, causing a painful and prickly sensation in response to cold temperatures or stress.

Although “icy hands” might sting, the foundation noted the activity is safe, and shared videos of people’s reactions make for a fun fundraising challenge. Anyone who fails to take the challenge is asked to donate $100; those who rise to the challenge and send a video of their “icy hands” plunge and reaction — with proper tags and hashtags — can donate any amount they wish.

People interested in taking part in awareness month walks but without one in their area are encouraged to start a walk/run of their own.  Contact the foundation for advice and tools at 800-722-HOPE (4673), or by email at [email protected].

Last year’s Stepping Out to Cure Scleroderma, also a virtual event due to the pandemic, raised more than $800,000 through 53 walk/runs featuring over 2,400 participants.

The Scleroderma Foundation is a national patient advocacy organization, with active chapters and 160 support groups across the U.S.  Through fundraising efforts, it reports awarding about $1 million in grant awards each year to support research into scleroderma treatments and a possible cure. It also supports people living with scleroderma through support programs, peer counseling, and educational events.