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Scleroderma Foundation
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eLetter #703 | March 17, 2017  

Make Your Voice Heard on Key Scleroderma Funding

Early each year, the United States Senate crafts an annual Department of2016 Capitol Hill Day Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). 

In recent years, the PRMRP funded nearly $10 million in meritorious and meaningful scleroderma research projects. Research on the underlying mechanisms of scleroderma is showing relevance to all fibrosis, which occurs at higher rates among individuals who serve in the military and our veterans. The Senate included “scleroderma” as a condition eligible for study during the current year, FY 2017, and it is important that we thank key Senators on behalf of the community and ask for their support again for FY 2018.

Senators are currently working on the FY 2018 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of scleroderma in the DoD PRMRP’s eligible conditions list in FY 2018.” 

Follow this link to learn more and reach out to the senators in your state.

 

Attention Moms of Scleroderma Patients

The mother of a juvenile scleroderma patient herself, Diane Weber started an online Facebook community for Sclero-Moms in a similar circumstance across the country to share ideas and know they are not alone.  The pageFacebook Icon 1 has moms from coast to coast and is by invitation only.  To join the conversation and idea exchange, please send an email to Kerri Connolly at kconnolly@scleroderma.org

PHA Webinar to be held March 23

Join PHA for the first webinar of the newly-diagnosed series, “Tests, Tests and More Tests: What is PH Diagnostic Testing Telling my Doctors?” We will review many of the clinical tests that are used in the diagnosis of PH.pha.jpg The session will discuss the risks and benefits of each test as well as how the information derived from testing is used to unravel different diagnoses of pulmonary hypertension. Register Today >>

 

Learn To Love Yourself Through Meditation

Instead of viewing your chronic illness as a disease in your body, choose to view it as an opportunity to reconnect with yourself and learn to love yourself meditate.jpg through meditation.  This article details some great relaxation techniques that you may find helpful in managing and coping with scleroderma.

 
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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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