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| eLetter #750 | Feruary 16, 2018 |
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Presidents
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Holiday Observance
In observance of the Presidents Day holiday, Monday, February 19, the Scleroderma Foundation National Office will be closed.
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2018 Capitol Hill Day Application
CALLING ALL ADVOCATES!
The Capitol Hill Day 2018 application is now available. Included in the application form is a request for scholarship assistance. An application is required whether you’re applying for a scholarship or not. We need advocates from certain voting districts in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington, and West Virginia.
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Grassroots Advocacy Webinar
"Using Your Voice to Meet with an Elected Official"
February 26, 2 p.m. ET
What does a scleroderma advocate do during Capitol Hill Day? Join our webinar on February 26 at 2 p.m. Eastern time to find out!
Sit in on a mock meeting that's just like the ones patient advocates have in the offices of Congress members. This small group of advocates will likely include a patient who had undergone stem cell therapy, a parent or caregiver of a child with scleroderma, a patient who uses a medical device and an advocate who works in a chapter. Excellent opportunity to see what the day is all about.
Join Feb. 26 Webinar; Dial 302-202-5900;
Enter Conference ID 710-462-255
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2018 National Patient Education Conference - July 27-29, Philadelphia
REGISTER ONLINE for the 2018 National Patient Education Conference at scleroderma.org/conference. If you prefer to register by mail, click here to download a registration form.
Hotel Information is also online. To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.
national.scleroderma.org/conference
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2018 Scholarship Application to Attend the National Patient Education Conference - July 27-29, Philadelphia
Scholarships are available for individuals with scleroderma to help them attend the National Patient Education Conference. March 21 is the deadline for applications to arrive at the Foundation office.
national.scleroderma.org/scholarship
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20th Anniversary
of the Scleroderma Foundation
Throughout 2018, the Scleroderma Foundation celebrates the 20th anniversary of our founding in 1998 when the United Scleroderma Foundation and the Scleroderma Federation became one entity. The Foundation’s mission—support, education, research—capitalizes on the momentum built by our predecessors. While individual chapters can trace their origins earlier, during 2018 we mark the vision of our founders to unite and to gain strength from our common goal to help people affected by scleroderma.
Our signature contribution to the field of scleroderma research continues to be finding and fostering brilliant scientists and innovative ideas to discover, understand, and overcome the causes, the mechanisms, and the symptoms of scleroderma. Our outstanding support and education programs give hope and resources to the 300,000 individuals and families affected by scleroderma in the United States.
While we celebrate our history, we are mindful that we stand on the threshold of the future. Uniting as one scleroderma community and raising the bar for research funding can launch a new era of scientific discovery and drug development to treat scleroderma. No one with scleroderma can afford to wait for a cure. We pursue our mission with an urgency born from witnessing the disfigurement and disability and death caused by this disease. Join our 20th anniversary celebration as we reach for the cure.
national.scleroderma.org
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Support Groups
Support groups enable individuals with scleroderma to meet and exchange information with others who face similar problems. Groups also host speakers on specific on a range of topics from time to time.
There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week this eLetter will highlight support groups associated with a particular chapter. The Ohio Chapter hosts eight groups around its state, plus one virtual group that meets by telephone monthly
Support Groups in Ohio
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Scleroderma & How it Affects
Our Children
Webinar, March 14, 7-9 p.m. Eastern
Dustin Fleck, M.D., Pediatric Rheumatologist from Michigan Medicine will be leading this webinar for parents of juvenile scleroderma patients and providing educational information about the disease, medications and current treatments.
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Rare Disease Day Tweetchat
Wednesday, February 28, 2018; 1 - 2 p.m. EST
In celebration of Rare Disease Day 2018, NORD (National Organization of Rare Disorders) will moderate a tweetchat on the important topic "What To Do If You or Your Child Receive a Rare Disease Diagnosis" with co-hosts Boston Children's Hospital and The Mighty.
NORD will be live-tweeting from @RareDiseases with Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Editor. Phillip L. Pearl, M.D., Director of Epilepsy and Clinical Neurophysiology at Boston Children’s Hospital and William G. Lennox, Chair and Professor of Neurology at Harvard Medical School, will be joining the chat from @BostonChildrens. Ashanthi De Silva, Rare Disease Editor for The Mighty, a digital health community created to empower and connect people facing health challenges and disabilities, will be joining from @TheMightySite.
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Yoga for Every Scleroderma Body
ONLINE VIDEO
Filmed at The Yoga Center – Reno during the Yoga for Scleroderma Practitioner training in June 2017, these segments are a collaboration with Lori Pierce and Joanne Fahnestock. Both Lori and Joanne are Yoga for Scleroderma Practitioners and have applied yoga to their own symptoms of scleroderma with great success. Lori and Joanne bring their experience and training to the topics you requested at the 2016 Scleroderma Foundation National Patient Education Conference!
Segments include Boat Pose for core strength; Leg Lifts for leg strength; Joanne’s Warrior Sequence for stamina in the lower body and balance, and Lori’s Sun Salutation made accessible to all!
Yoga for Every Scleroderma Body
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Stepping Out 2018
Help us take one step closer to finding a cure for scleroderma! Join us at a Stepping Out to Cure Scleroderma walk or run near you. Gather your family, friends, and coworkers and form a team. Create a fundraising page on the Stepping Out website and use the online tools to request donations and manage your team.
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| Clinical Trial Update |
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CATALYST Trial
If you have scleroderma and PAH (pulmonary arterial hypertension), please visit www.CATALYSTtrial.com to learn more about a research study evaluating a once daily oral drug.
learn more
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Disclaimer: The Scleroderma Foundation in no way
endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is
provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
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