SAN FRANCISCO, BOSTON and HAMILTON, Ontario, June 1, 2015 /PRNewswire-USNewswire/ -- 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 Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada.
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.
"With the recent breakthroughs in research and the growing interest from industry, we are very optimistic about what the future holds for scleroderma patients," said Amy Hewitt, executive director of the Scleroderma Research Foundation. "It is through the collective efforts of our organizations that will continue to accelerate progress."
Scleroderma is a crippling autoimmune disorder characterized by a thickening and 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 patients' hearts, lungs and other organs, often leading to a prolonged and painful death.
"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."
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 officer for the Scleroderma Foundation. "It's the walk a mile in someone's shoes 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 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 21 chapters and 160 support groups committed to carrying out the three-fold mission of support, education and research. The Scleroderma Foundation is one of the largest nonprofit funders of peer-reviewed medical research, in 2015 making available $2 million in new research grants to find the cause, better treatments and a cure for scleroderma.
Scleroderma Research Foundation
The Scleroderma Research Foundation (SRF) 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 at improved therapies and a cure. Today, we are one of the nation's largest nonprofit investors in scleroderma research. Patients and their loved ones find hope in the fact the SRF is dedicated exclusively to funding medical research that will help them live longer, fuller lives.
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 to find a cure. Until then, we will work to improve the quality of life for those with scleroderma.
SOURCE Scleroderma Foundation; Scleroderma Research Foundation; Scleroderma Society of Canada