A New Scleroderma Foundation

Marta Mark Fund for the Multi-Center Collaborative Grants Eradication of Scleroderma Grant and New Investigator Conference Interactive Body Tool Launched Established Rare Disease Act of 2001 Introduced The Foundation announced that for the The late Rudolph Juhl honored his sister, The Rare Diseases Act was introduced by Sen. first time funding will be available in Marta Marx, with a bequest of $3.8 million. Niagara Falls Illuminated for Scleroderma Awareness Orrin Hatch (Utah) and the late Sen. Edward 2014 to support research between two The gift was designated to help strengthen Kennedy (Mass.) The legislation calls to begin or more scleroderma centers at different the Foundation’s research grant program. an Office of Rare Diseases at the National 15 YEARS OF FIGHTING SCLERODERMA institutions. This will advance partnerships Scleroderma Foundation Introduces New Logo “Mr. Juhl has provided the answer to a Institutes of Health; authorize regional centers and research into the disease. Also in prayer. Through the years, the Scleroderma of excellence to rare disease research and 2013, the organization held the first New Foundation has established a well- training; and increase funding for the FDA’s Investigator Conference. This event was recognized funding program, but despite Legislation Passed to Study Impact of Orphan Product Research grant program. Also designed to nurture the next generation of the many contributions of its members, in 2001, the Scleroderma Foundation held its Autoimmune Disease in Maryland scleroderma researchers. New investigators research funds are still very limited,” said On Jan. 1, 1998, the east coast-based Scleroderma Federation and the west coast-based first Capitol Hill Day to send people affected were given the opportunity to discuss their Marie Coyle, one of the Foundation’s Terry on the Prairie United Scleroderma Foundation merged to create a new organization, the Scleroderma by scleroderma to Washington to discuss the progress, facilitate interactions and provide founding members and current national Bosentan approved by FDA Scleroderma Foundation Launched Echo Campaign Foundation. The merger would create a unified body dedicated to patient support, disease with their legislators. Stepping Out to Cure Scleroderma First African-American constructive feedback and offer career Board member. for PAH Treatment Terry Twitchell rode 3,293 miles Department of Defense Announced education and the advancement of medical research. Events Kicked Off Scleroderma Patient Education Day mentoring in a supportive environment. from Oregon to Massachusetts to Scleroderma Eligible for Funding from Peer The Echo Campaign was designed to A new interactive tool was launched to help people see The FDA approved bosentan (TracleerTM) raise money for the Scleroderma Reviewed Medical Research Program inform medical professionals about “Fifteen years ago at the time of the merger, we made a quantum leap into the future. With the help of Dr. Virginia Steen and how scleroderma affects the skin, gastrointestinal, eyes, for use to treat pulmonary arterial Foundation. the importance of echocardiogram Our goal was to expand services and care for those living with scleroderma on a national Dr. Laura K. Hummers, the Scleroderma kidneys, lungs and other systems of the body. “There hypertension, or PAH, a life-threatening Through an act of Congress, the Department of screenings for people living with level,” said Marie Coyle, the then-president of the Scleroderma Federation. Today, she is a First Systemic Sclerosis Foundation hosted a special education event are many similar tools available online but they don’t comorbid condition that people with Defense made available $50 million in research scleroderma. An echocardiogram member of the Foundation’s National Board of Directors and president of the New England World Congress Held designed especially for African Americans. Eating Well with Scleroderma New Scleroderma Research speak to the specific nature of scleroderma and its The Scleroderma Foundation worked with Adfiliation systemic sclerosis are at risk to develop. grants for 21 approved diseases and conditions, is a first-line screening test to precise symptoms,” said Kerri Connolly, the Foundation’s Chapter. “I am thrilled with our accomplishments since that time, particularly the research More than 70 people attended the event The Tri-State Chapter and the Buffalo Support Group held an Funding Focused on Lung Advertising, headquartered in Eugene, Ore., to design including scleroderma, that were deemed to determine if a person with systemic Director of Programs and Services. that has been funded. I am grateful for the leadership and staff at the national office who The first World Congress for Systemic held in Washington, D.C. educational forum at the Niagara Falls Memorial Medical Center. We collaborated with Linda Kaminski Involvement a new logo to reflect the merger of the Scleroderma impact military personnel and their beneficiaries. sclerosis has developed pulmonary have kept their collective eyes on the goals that were set early on. Let’s continue on until Sclerosis was held in Florence, Italy. The and Dr. Dinesh Khanna to produce an Federation and the United Scleroderma Federation. From Maryland’s governor signed legislation to create a task force to arterial hypertension. The campaign Event organizers worked with U.S. and Canadian officials to turn the cure is found!” event brought together scleroderma informative nutrition brochure to help The organization has collaborated with Visit www.scleroderma.org/body today! the winter 1999 issue of Scleroderma Newsline: “The new study the impact of autoimmune disease in the state. The task force featured its own microsite and a the natural landmark teal to help spread scleroderma awareness. Websites Launched for The organization started a new walk-a-thon event Now You See Him… patients and experts from all over the people living with scleroderma. Many the American Thoracic Society to fund a logo is dynamic, eye-catching and distinctive, combining was the first of its kind and expected to serve as a model for other medical journal about PAH-related “I was delighted when the merger finally happened,” said Maureen D. Mayes, M.D., of Chapters and Support Groups called “Stepping Out to Cure Scleroderma.” Each walk- world to discuss current therapies and individuals with the disease also have two-year research grant specific to lung a perception of both power and benevolence.” states. The Scleroderma Foundation, Multiple Sclerosis Society and research called “Scleroderma the University of Texas Health Science Center. “I believe that the cause of scleroderma is The “Many Faces, One a-thon provides an opportunity for local community Former Detroit Lion and professional research. The third World Congress is gastrointestinal issues. The brochure involvement in scleroderma. Sjogren’s Syndrome Foundation worked together to introduce the Spectrum.” much better served by having one, unified voice representing the concerns of those living Voice” awareness campaign Each Scleroderma Foundation chapter and to come together to raise funds and awareness for Football Hall of Fame member Barry scheduled for 2014 in Rome, Italy. includes tips and resources for how to legislation. with this disease and working to fund important peer-reviewed research to find a cure.” began in 2001, featuring support group launched its web presence scleroderma. Sanders released the book “Now You eat better with GI troubles. several people living with to help expand their reach to scleroderma See Him…” A chapter of the book is scleroderma. patients around the country. about his sister, Nancy, who lost her 1998 2000 2002 2004 battle with scleroderma. 2006 2008 2010 2012

Luciano Pavarotti Taped New PSA Tells the Scleroderma Patient’s Story Popular Brochures Offered in 1999 Scleroderma PSAs 2001 2003 Football Great Lenny Moore 2005 2007 2009 2011 2013 Spanish and Portuguese Dateline NBC Features Segment on Stem Testified on Capitol Hill Adopt-a-Highway Sign Promotes Continuing Education Program Started for Cell Transplantation and Scleroderma We worked to translate four of our Go Speed Racer! Scleroderma Bill Passed by Worldwide Scleroderma Collaboration Scleroderma Awareness Live from New York! Medical Professionals most popular educational brochures New “Yoga for Scleroderma” House of Representatives Scleroderma Foundation NBC’s “Dateline NBC” featured a segment on Advocacy Network Formed For the first time, the Faculty from The University of NIH Funds Native American Study into Spanish and Portuguese. Video Produced Re-Launched Scleroderma.org In an effort to help educate the medical community bone marrow transplantation as a potential new Scleroderma Foundation Thanks to the leadership of the National Texas Health Science Center Associated with Scleroderma Nevada PSA Features Rita Rudner about scleroderma, the organization launched a treatment for scleroderma. Dr. Daniel Furst was The Scleroderma Foundation served as an associate Advocacy Committee, the Foundation helped in Houston established an The Scleroderma Foundation released Connecting People The Foundation’s website was redesigned, into Continuing Education Program. The first course available interviewed for the program in addition to a launched a new initiative to form sponsor of a vehicle in the pass the “Scleroderma Research and Awareness international network with The National Institute of Arthritis and the video “Yoga for Scleroderma” with The Nevada Chapter filmed a PSA featuring a sleeker, more user-friendly design to make for physicians, nurses and allied health professionals scleroderma patient from Washington about the Scleroderma Foundation Joined Patient and a grassroots advocacy network NASCAR Busch Series. The Act” in the U.S. House of Representatives during researchers at Fudan University Musculoskeletal and Skin Diseases The late opera star Luciano Pavarotti instructor Kathleen Randolph. The In 2004, the Scleroderma Foundation comedienne Rita Rudner to appear on Las it easier for patients to navigate the sea of was a web-based session about current screening experimental, but hopeful procedure. Consumer Coalition of patients, family members, Foundation teamed up with the 111th session of Congress. in China. The collaboration called (NIAMS) coordinated a study looking at taped a series of public service project was funded by a $20,000 grant launched its first online discussion board Vegas-area television stations. scleroderma-related information and resources. measures to help with the early diagnosis of pulmonary and chapter and support group Team Rensi and the No. the International Network of the prevalence of scleroderma in the announcements for national TV. The from the Texas Bluebonnet Chapter. In called “Get Connected.” Today, the The project was completed with input from arterial hypertension associated with scleroderma. The Scleroderma Foundation joined the Patient and leaders. The network will help 25 Free Credit Report car Scleroderma Clinical Care and Oklahoma Choctaw Native American tenor joined “Seinfeld” star Jason the video, Randolph and Foundation organization collaborates with Inspire. chapters, support group, leaders and patients. The CME course was planned and implemented with Consumer Coalition, a part of the National Organization connect with legislators to help driven by David Gilliland. Research (inSCAR) is designed population. The study implicated Alexander as a spokesperson for the members demonstrated a yoga program The tool has helped people connect from The redesign was made possible by a generous the help of the Accreditation Council for Continuing for Rare Disorders (NORD). The coalition works to create more awareness about the The organization’s logo to help clinicians compare a possible susceptibility gene for organization. “We are extremely designed to alleviate scleroderma all over the world with others who live Juliette Rizzo and the Delaware Valley Chapter gift from the estate of Ben D. Rea. Medical Education through the joint sponsorship The Tri-State Chapter contacted the New advocate for timely approval of safe and effective disease. Lenny Moore, a former NFL running back for the appeared on the team’s car, treatment and research data, and Thanks to the efforts of Michigan Chapter leadership, the scleroderma called protein fibrillin-1. grateful that a man of Pavarroti’s symptoms. Yoga practice has been with scleroderma, while offering a place appeared on NBC’s “The Today Show.” Juliette of the Postgraduate Institute for Medicine and the York State Transportation Department to prescription drugs and medical devices, and to serve Baltimore Colts, offered moving testimony toa uniform, crew uniforms, accelerate the development of Scleroderma Foundation produced a new public service worldwide eminence has devoted shown to relieve fatigue, boost energy of support and inspiration. spoke with Al Roker about Scleroderma Scleroderma Foundation. have a portion of the Sunrise Highway as a voice for patient and consumers in advocating for Congressional committee in Washington, D.C. on behalf crew race day T-shirts and new treatments for the disease. announcement video that expressed the views of the himself to scleroderma,” said former levels, reduce stress and keep muscles Awareness Month activities. in Bayshore, Long Island featured on federal policies that could lead to increased availability of the Scleroderma Foundation. Moore told the story trailer. scleroderma patient. The 10-minute video featured the Scleroderma Foundation President and joints flexible. an “Adopt-a-Highway” sign with the to affordable drugs. of his son’s initial misdiagnosis and later struggle with stories of several patients, as well as Barry Sanders, Jason David Andrea. Scleroderma Foundation logo. scleroderma, which resulted with his death at 42. Alexander and others.