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Scleroderma Foundation
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eLetter #729 | September 22, 2017  

ACTION ALERT – Graham-Cassidy Healthcare Legislation

Action Alert

Please contact your U.S. Senators today!  People affected by scleroderma and other chronic illnesses will be hurt by the U.S. Senate’s proposed Graham-Cassidy healthcare legislation.  The Scleroderma Foundation is not engaging in partisan politics.  Our advocacy efforts are directly focused on any healthcare-related legislation addressing basic tenants that are important to people living with scleroderma and other chronic illnesses. 

You can take action by asking your U.S. Senators to vote NO on the Graham-Cassidy Healthcare Legislation.  Doing so is not taking a political side—it’s advocating to ensure that those living with scleroderma (as well as the millions of other Americans with chronic, debilitating illnesses) have access to necessary healthcare to contribute to the best life possible.

In a few easy steps, you can send a personalized message to your U.S. Senators today by following the Take Action link below.  Please take advantage of the opportunity to also explain briefly how scleroderma has affected your life.  Our individual voices join together as a strong, unified message.

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Behind Every Dark Cloud is HOPE!

Andrew BotieriWatch the opening keynote address by Andrew Botieri at the 2017 Patient Education Conference in Arizona.  (Run Time 40:13)

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Clinical Trials Overview Webinar

Pulmonary

Wednesday,  September 27, 2017

1 p.m. - 2 p.m. ET 
(12 p.m. – 1 p.m. CT; 11 a.m. -12 Noon MT; 
10 a.m. – 11 a.m. PT)

Presented by: Rex Edwards, Vice President, Care Center Network & PFF Patient Registry; and David J. Lederer, MD, MS, PFF Senior Medical Advisor, Education and Awareness

Register and Submit Questions (Please submit your question on this topic upon registration.)

Register Here

PAH in Systemic Sclerosis - Learn More in a Special Section in the Upcoming Issue of the Scleroderma Voice

Voice Fall 2017 CoverPulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8% to 12% of patients with systemic sclerosis. Learn more about risk factors, screening tests, and treatment options for PAH in a special section of the Scleroderma Voicemagazine, the member magazine of the Scleroderma Foundation. The special section also includes a tear-out questionnaire to share with your physician. The next issue of the Voice is coming to your mail box in early October. If you don’t receive the Voice, click here to become a Scleroderma Foundation member or renew your annual membership.

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For Kids:  “About Skin: Your Body’s Largest Organ”

American Academy of DermatologyOnline resource from the American Academy of Dermatology to help children learn about skin as an organ of the body and related health issues.

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Products that Benefit

CDCThe Centers for Disease Control and Prevention publish an online resource to help you understand the benefits and concerns about flu vaccines, including notes on who should and who should not get a flu vaccine. 

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Products that Benefit

Per FektPer-Fekt® is a line of make-up that may be helpful in covering scars.

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Outstanding Patient Support Award – Ohio Chapter

Award

This year, the Outstanding Patient Support Award went to a chapter that established active support groups in nearly every corner of its geographical area.  Last year was the Ohio Chapter’s 15th anniversary.  In 2001, the chapter had three support groups.  Now they have eight plus one virtual group that meets regularly.  The chapter’s calendar is filled with patient education events that engage patients with some of the best health care providers in the area.   

(Photo L-R: Executive Director Tina Fellows and National CEO Robert Riggs)

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Finding Purpose After Diagnosis

Dee Burlie

As a person with scleroderma, Dee Burlile knows all too well the obstacles that confront individuals and their families affected by the disease.  After diagnosis, Dee found the Scleroderma Foundation online and reached out for help.  Now, she works with the foundation to advocate for greater awareness and to offer help.

"I feel like my involvement with the foundation has once again given me a purpose, and it has provided me with the resources to help others in the scleroderma community." –Dee Burlile

Read more about Dee Burlile and how she found purpose after diagnosis.

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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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