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eLetter #748 | Feruary 2, 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. Please note that an application is required by everyone who is interested in participating—whether you’re applying for a scholarship or not, if you are local to the Washington, DC area, or if you’ve represented the Scleroderma Foundation as a Capitol Hill Day advocate many times.
We are especially looking for advocates from certain voting districts in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington, and West Virginia. Why, you ask? It’s all in the application.
Deadline to apply (scholarship and non-scholarship) is Wednesday, February 28, 2018.
To learn more about what patient advocates actually do (what a day on Capitol Hill is like), please join our webinar on Monday, February 26 at 2 p.m. Eastern. Go to: https://join.me/scleroderma.org; d ial 302-202-5900; enter conference ID 710-462-255.More information about upcoming and previous our grassroots advocacy training webinars may be found on the Advocate Resources page.
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2018 National Patient Education Conference - July 27-29, Philadelphia
ONLINE REGISTRATION IS NOW LIVE
Register online for the 2018 National Patient Education Conference at scleroderma.org/conference. If you prefer to register by mail, the conference website also has a link to a PDF form to download.
You may also download a scholarship application. The application deadline is March 21.
Hotel & travel information is also online. Space is limited, so book your hotel room early. To receive the group room rate of $169, book your hotel room directly with Loews Philadelphia Hotel. Call the hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or book your room via Loews' online system.
more conference info
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Grassroots Advocacy: Public Speaking Video
Watch a recording of the January 22 grassroots advocacy webinar on public speaking that addresses gestures and body language, speaking to diverse audiences, visual aids and props, and talking about the scleroderma.
watch video
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The 20 Percent Scleroderma Man Webinar For Men Only NEW DATE: February 8, 2018, 7-9 p.m. Eastern
An educational webinar for males only who have scleroderma presented by rheumatologist, Dr. Vivek Nagaraja, from Michigan Medicine. Topics will include gender specific aspects of scleroderma.
to register
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Inspire
Join the scleroderma online community at Inspire.com, where nearly 40,000 people who are affected by scleroderma discuss every day issues of living with the disease.
join inspire
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Support Groups
Joining a scleroderma support group enables a person with scleroderma to meet and exchange information with others who have similar problems, in addition to learning more about the disease. There are many Foundation affiliated support groups around the country, although some areas are less well represented.
Each week this eLetter will highlight support groups located in different parts of the country. In New York, Connecticut, and New Jersey, an area managed by the Tri-State Chapter, there are 14 groups. Three in Connecticut, two in New Jersey, and nine in New York State. The chapter also manages a men's Facebook group, called ScleroMen.
read more
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PAH in Systemic Sclerosis Learn More in a Special Article from Scleroderma Voice
Pulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8 percent to 12 percent of patients with systemic sclerosis (SSc). Learn more about risk factors, screening tests, and treatment options for PAH in a special article that appeared in the Fall 2017 edition of Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation. The article includes a questionnaire for you to complete and share with your physician.
read about PAH in SSc
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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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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 National 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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