The Scleroderma Research Foundation: The Search for a Cure

At Pogopalooza 10, throughout the streets of New York City, pogoers from around the world will mock gravity and bend the known laws of physics; Sir Newton will sit up from his grave to take notice. One such pogoer, James Roumeliotis of Bounce to a Cure, will be doing much more than breaking world records.

This year, James will be breaking the mother of all records, in the mother of all cities: most consecutive bounces on a pogo stick in New York City. All donations will be going directly to The Scleroderma Research Foundation through their Cure Crew donation site.

SRF Logo

Scleroderma was once known as a “niche” disease and only recently has it started to attract attention from leading researchers who are collaborating to understand the complicated mechanisms behind its telltale scarring and life-threatening complications. Not so long ago, a newly diagnosed scleroderma patient was told to just “wait and see” but there are now a growing number of specialty Centers of Excellence offering comprehensive care. Scleroderma is different for every patient. It was often misdiagnosed until symptoms became too grave to ignore. This is changing fast thanks to organizations like The Scleroderma Research Foundation which is leading the charge for the most promising research aimed at better treatments and a cure. Patients are being diagnosed earlier and new diagnostic tests can better identify symptoms before they become too detrimental for successful intervention. Patients are living longer, and scleroderma is becoming a treatable disease, but that’s not enough. Every year, an estimated 10,000 patients die from its complications and scores more are newly diagnosed. Patients need more than treatment of symptoms; they need increased awareness of their illness and a cure.

The Scleroderma Research Foundation was founded in 1987 by scleroderma patient Sharon Monsky (1953-2002). She once said in an interview with The New York Times, “It’s a hard one to sell. [Scleroderma] It’s a mysterious disease. It’s an ugly disease. And there are no scleroderma poster children to help”. Twenty five years later in 2013, it is still a hard sell, but scleroderma is becoming less and less mysterious thanks to  new research, an expanding patient population and interest from pharmaceutical companies both large and small that recognize the vital role they can play in both prolonging and improving lives.

Because of the seeds planted by Sharon Monsky, The Scleroderma Research Foundation continues its work after her passing. “Research is the key and focused medical research will result in improved therapeutics and a cure.”

Research and collaboration has brought the SRF to the forefront of scleroderma treatment. They provide free education to patients about their progress in research, detailed and easy to repeat explanations of scleroderma (to help patients explain to their families what scleroderma is) and education about treatment options as well as currently available clinical trials. The Scleroderma Research Foundation provides patients nationwide with tools to be their own best advocates by providing free, online educational webinars and an easy to use website. Their office in San Francisco answers all phone calls to help patients find medical practitioners who know more about scleroderma

We are very excited to be supporting The Scleroderma Research Foundation for this year’s world record attempt. Stay tuned for the details of where you can find James Roumeliotis at Pogopalooza 10, and how you can donate to the Scleroderma Research Foundation.

Every new effective treatment is a milestone; but just over the horizon, there is a cure.

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