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Scleroderma Foundation
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eLetter #627 | October 9, 2015  

Coping with Scleroderma

support, hugA common reaction to being told that one has a disease such as scleroderma is “Why me?” It is unknown why some people develop the disease and others do not. One does not bring scleroderma upon himself or herself; therefore, one shouldn’t feel guilty or responsible for the illness.

It's important that you also look at the emotional aspects and building a healthy support network so you can best cope with living with scleroderma.

Read more about coping with scleroderma and some helpful tips on our website >>


Resources for Amputees

scleroderma hand involvementAmputee Coalition has compiled a comprehensive list of resources in their Limb Loss Resource Center, covering topics such as:

  • Adaptive resources
  • Financial assistance
  • Prosthetics
  • Skin and wound care
  • Rehabilitation
  • Support

Some materials are also available in Spanish.

Discover the resources from Amputee Coalition >>

Thank You for Reaching Out to Congress

thank youThe Foundation’s Advocacy Day on October 6 in Washington, D.C. was a tremendous success. We want to thank all of you who took action and invited your elected officials to our Congressional Luncheon. We had a standing-room only crowd in attendance where we honored scleroderma champions in the Senate, Sen. Gillibrand (NY), Sen. Blunt (MO) and Sen. Stabenow (MI). 

“The Scleroderma and Fibrosis Research Enhancement Act of 2015” has been introduced into the House of Representatives, and we hope it will be introduced into the Senate very soon. We’ll be reaching out to our Foundation family to help us put pressure on our elected officials to move this important legislation forward. Meanwhile, learn more about the legislation and our efforts here.

Video: Scleroderma Mini Medical School
A User's Guide to Medical Jargon

Video: Scleroderma Mini Medical School
In this interactive and problem-based practical session from the 2015 National Scleroderma Foundation Patient Education Conference, Dr. Jessica Gordon reviews the diagnostic testing conducted during an initial evaluation and continued follow-up of patients living with scleroderma, including general blood work, auto-antibody testing, pulmonary function testing, echocardiography, CT scans, right heart catheterizations and other studies.

The goal of this session is to empower patients so they feel comfortable obtaining and reviewing their results. With this background, patients with scleroderma should feel more at ease understanding their disease and improving their discourse.

View the entire session now >>

Patient Education Conference: Risk Factors for African Americans

african american patient education day.jpgThe Scleroderma Foundation's Greater Washington D.C. Chapter is hosting a patient education conference to discuss Risk Factors for African Americans from 10 a.m. to 2 p.m. on Saturday, Oct. 17, 2015.

The event will be held at Georgetown University Hospital in the Gorman Building, in Washington, D.C.

Speakers include: Dr. Virginia Steen, of Georgetown University Hospital; Dr. Laura Hummers, of Johns Hopkins University; plus other medical professionals.

Early bird registration is $10 and on-site registration is $15.

Register online today at www.scleroderma.org/patienteducationconferencewashingtondc

Download an event postcard >>

Juvenile Scleroderma Symposium in Germany

kids runningDr. Ivan Foeldvari invites you to attend a symposium about Juvenile Scleroderma and new developments on Dec. 5, 2015. The event will be held in Hamburg, Germany.

Speakers include: Dr. Kathryn Torok, of the University of Pittsburgh; Dr. Eileen Baildem, of Liverpool, United Kingdom; and Dr. Peter Hoger, of Hamburg, Germany.

To register for the event, email sekreteriat@kinderrheumatologie.de

Download an event flier >>

National Office Will Be Closed Monday

Please note: The National Office will be closed Monday, Oct. 12, 2015, in observance of the Columbus Day holiday. We will reopen again at 8:30 a.m. eastern Tuesday, Oct. 13, for regular business hours.

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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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