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| eLetter #749 | Feruary 9, 2018 |
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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.
Also online are the scholarship application (deadline 3/21) and hotel & travel information.
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.
more conference info
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"Facebook Live" from 5th Systemic Sclerosis World Congress
Each person living with scleroderma has a special story. On February 16 at 11 a.m. Eastern time, the Scleroderma Foundation's Facebook page will share a special "Facebook Live" broadcast from the Systemic Sclerosis World Congress. Robert Riggs, CEO of the Scleroderma Foundation, will facilitate an awareness discussion with an international panel of individuals living with scleroderma from Europe and the United States.
Facebook.com/sclerodermaUS
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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 Michigan Chapter hosts eight groups around its state, including one virtual group that meets every other month.
support groups in Michigan
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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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BRAVOS Study
Diffuse cutaneous systemic sclerosis (dcSSc) is an autoimmune disease also known as progressive scleroderma. The BRAVOS clinical trial is currently enrolling scleroderma patients to determine the safety and tolerability of brentuximab vedotin, a drug that is FDA-approved for the treatment of Hodgkin’s and other lymphomas.
The BRAVOS study is being conducted at research centers across the United States. You may be eligible to participate in the BRAVOS study if you:
- Are 18 to 70 years old
- Have been diagnosed with dcSSc
- Have had dcSSc for 5 or fewer years
- Are on ongoing immunosuppressive therapy with one of the following: methotrexate, mycophenolate mofetil or azathioprine
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Research Participation Opportunity
Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.
For more information, please call 615-627-4121 or email bkaelin@cumberlandpharma.com.
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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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