Scleroderma: A rare disease with no known cause or cure

Scleroderma: A rare disease with no known cause or cure

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Scleroderma is a hard word to pronounce, and a harder disease to endure than many. Three leading scleroderma advocacy and research organizations are teaming up again during June’s Scleroderma Awareness Month to boost awareness and compel greater compassion for patients and their families.

The primary partners are Scleroderma Society of Canada, Scleroderma Foundation and Scleroderma Research Foundation.

The campaign is named “Hard word. Harder disease.” The theme touches on the difficulty of the word and the gravity of scleroderma, a rare disease with no known cause or cure. It will run across partner Facebook and Twitter channels (#hardword) throughout the month of June, with visuals and copy that educate and challenge people to take a pledge to learn more.

This year’s campaign also includes blogger outreach throughout North America. A microsite, sclerodermaaware.org, serves as the landing page for the pledge and general information about scleroderma with links to additional resources.

“Scleroderma is difficult to diagnose, so patients often suffer for years before receiving a firm diagnosis,” said Maureen Sauve, president of the Scleroderma Society of Canada. “Because scleroderma is often misunderstood or unknown altogether, patients often feel isolated with their struggles. Working together, we can be more effective in broadening consumer awareness.”

“Just this past year, groundbreaking research was announced at Michigan State University that could significantly change the quality of life for scleroderma patients,” said Amy Hewitt, executive director for the Scleroderma Research Foundation. “It’s important that we work together to maximize the momentum of this discovery.”

Scleroderma is a crippling autoimmune disorder characterized by a thickening hardening of the skin that is so severe, it steals away the use of patients’ fingers, hands and limbs. As it advances across their bodies, the uncontrolled growth of fibrous tissue can damage patient’s hearts, lungs and other organs, often leading to a prolonged and painful death.

The campaign will leverage key opportunities throughout the month, notably World Scleroderma Day on June 29.

“Our strategy is to compel those who are not immediately impacted by scleroderma to relate to the disease, and therefore be more likely to empathize,” said Robert J. Riggs, chief executive for the Scleroderma Foundation. “It’s the walk a mile in someone’s shows philosophy. While one may not have an immediate connection with scleroderma, one can certainly relate to the symptoms and challenges associated with the disease.”

The Scleroderma Society of Canada is participating in June Awareness through the annual event “Walk or Run in the Park for Scleroderma,” which are held in Ontario, Manitoba, and Nova Scotia. The walks are the Scleroderma Society of Canada’s largest single fundraiser and provide invaluable resources for patient advocacy, education and for research that continues to enhance treatment and move ever closer to finding a cure.

Scleroderma Foundation

The Scleroderma Foundation is the national organization for people with scleroderma, their families and friends. Headquartered in the metro Boston area in Danvers, Mass., the Foundation has a network of 23 chapters and 150 support groups committed to carrying out the three-fold mission of support, education and research.

Scleroderma Research Foundation

The Scleroderma Research Foundation was established in 1987 by patient turned activist Sharon Monsky when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we’ve stood firm in our belief that the best way to help scleroderma patients is to fund medical research aimed to improved therapies and a cure. Today, they are one of the nation’s largest nonprofit investors in scleroderma research.

Scleroderma Society of Canada

The Scleroderma Society of Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives. The Scleroderma Society of Canada is committed to promoting public awareness, supporting those affected by scleroderma and funding research.

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