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| eLetter #734 | October 27, 2017 |
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Video - Laugh at What Scares You
Karen Vasquez shared her humorous point of view at the 2017 National Patient Education Conference, and the story of how she found sunshine under a rock in the middle of a rain forest, plus other skills she learned while life messed with her plans.
watch video
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Scleroderma Researcher Profile
The Scleroderma Foundation is funding research by Bradley A. Maron, M.D. of Brigham and Women’s Hospital in Boston, into pulmonary arterial hypertension, which is a high risk related disease for people with scleroderma. Dr. Maron says, “Discovering new mechanisms that cause lung blood vessel scarring could find new therapies for patients within systemic sclerosis.”
scleroderma research grant programs
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Grassroots Advocacy Training - Recording
Public policy advocacy on behalf of people affected by scleroderma at both the state and federal level is crucial to making a difference in their lives. The Scleroderma Foundation now offers monthly grassroots advocacy training webinars. Watch the recording of webinar one, "Grassroots Advocacy Overview," from October 23, 2017.
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Pain Management
How a Positive Attitude Can Improve Your Pain - and Your Life. Peter Abaci, M.D. writes a blog entry on WebMD.com that addresses pain management and suggests your attitude plays a big role.
read more
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Advocate of the Year
Rod Douglas is the Scleroderma Foundation’s 2017 Advocate of the Year. Rod lost his sister in 2006 after her 10-year battle with scleroderma. Ever since, he has dedicated his time to spreading awareness of the disease as an advocate in Washington, D.C., (he attended Capitol Hill Day) and through his personal blog. He’s also a member of the Missouri Chapter’s board of directors and is a retired veteran of the US Air Force.
read more
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State by State Energy Assistance
Benefits.gov provides a state by state listing of energy assistance programs. Visit this website and scroll through the list of sites to find your state.
read more
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Assisted Shaving Razor
Gillette developed a razor specifically for caregivers to use when shaving a person who needs assistance. Find information about the product at the link below.
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Successful Delphinus Engineering Golf Tournament
The third annual Delphinus Engineering Golf Tournament to benefit the Scleroderma Foundation took place October 9 at the Bide-A-Wee Golf Club in Portsmouth, Virginia, and raised $40,000 with 124 golfers. Jerry Austin created and continues to manage this highly successful tournament in honor of his wife, Sandy. Pictured in photo from Delphinus Engineering (L-R): Jerry Austin, Director, Habitability Progams, Rachel Sherman, Project Manager, and Roby Lentz, Executive Vice President.
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2018 National Patient Education Conference
Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.
sign up for e-alerts
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Volunteer Opportunities
Giving your time, talent, and expertise is just as valuable to the Scleroderma Foundation as monetary donations. Follow this link below to learn about the wide range of volunteer opportunities available to you at every level of our organization.
volunteer opportunities
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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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