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eLetter #844 | December 20, 2019  

Christmas Tree


Holiday Office Closing, December 25

In observance of the Christmas holiday, the Scleroderma Foundation National Office will be closed December 25.  Calls to (800) 722-4673 will go to voice mail and will be answered on Thursday, December 26.  Email received at SFinfo@scleroderma.org will be replied to on the 26th, also.  

Merry Christmas!

SCLERODERMA.ORG

Julia Ceresnak Representative Anna Eshoo

Julia Ceresnak & Rep. Anna Eshoo


Meet Julia. She's 9. She Talks to Congress.

Julia Ceresnak describes herself as kind, awesome, cute, funny, friendly and brave. Bravery is a trait that Julia developed at age five when her scleroderma was diagnosed. Now 9 years old, Julia’s bravery took her to Washington, D.C. to attend Capitol Hill Day. Along with her father and a team of 50 scleroderma advocates, she met with U.S. Representatives and Senators to seek support for bills H.R. 3446 and S. 2477 to improve coordination of federally-funded scleroderma research.

“My favorite part of Capitol Hill Day was hearing everyone’s stories,” Julia recalls. “It was interesting to hear how everyone was diagnosed with scleroderma. I really enjoyed walking to all the meetings and trying to guess what the snacks would be in each of the offices. I also really enjoyed eating my lollipop at Representative Anna Eshoo’s desk.”

Together, we can help children like Julia focus on their dreams rather than their disease.

DONATE TODAY

Raynaud Phenomenon Brochure 2019


Raynaud Phenomenon Brochure

Raynaud Phenomenon is one of the more common related conditions for individuals who have scleroderma.  Frederick Wigley, M.D., helped the Foundation prepare a brochure with information for individuals who have scleroderma and Raynaud.  The brochure includes:

  • What is Raynaud Phenomenon?
  • Who Gets Raynaud Phenomenon?
  • What Causes Raynaud Phenomenon?
  • How is Raynaud Phenomenon Diagnosed?
  • How is Raynaud Phenomenon Treated?
    • Non-Drug Therapy
    • Drug Therapy

BROCHURE

Capitol Hill Day 2019 Group

Capitol Hill Day 2019


Coordinating Scleroderma Research 

There are two bills in Congress right now to coordinate research related to scleroderma and other fibrotic diseases, research that is already funded by the National Institutes of Health. Those bills need your help. The House bill is H.R. 3446, and the Senate bill is S. 2477.  Both are titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019, and are bipartisan and budget-neutral.

You can help by asking your U.S. Representative and Senators to become a cosponsor. Go to scleroderma.org/advocacy, print the advocacy letters, sign, scan, and email to advocacy@scleroderma.org. Or, mail to Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923. Letters will be hand-delivered to Capitol Hill.

READ MORE

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Resources

Find a wide range of resources on the Scleroderma Foundation's website, including:

  • "On Call" and "What's Up, Doc?" articles from past editions of Scleroderma Voice magazine
  • Scleroderma Information Packet
  • Access to Inspire.com discussion board
  • eLetter Archive
  • Buzzworthy Reads
  • NeedyMeds
  • Alternative therapies, legal advice, disability advice, government agencies, insurance, and more
  • Designated Scleroderma Research & Treatment Centers
  • Other Related Organizations and Helpful Links
  • Registries
  • Recommended Reading
  • Clinical Trials
  • Scleroderma Videos

RESOURCES

Clinical Trial Opportunity

Cumberland Pharmaceuticals ifetroban trial

Aiming to Prevent Cardiomyopathy

If you are an adult with systemic sclerosis, you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug, called ifetroban, to determine if symptoms improve. Eligible subjects will be reimbursed for their time and travel. Trial Locations:

  • Baltimore, Maryland
  • Boston, Massachusetts
  • Charleston, South Carolina
  • Dallas, Texas
  • Los Angeles, California
  • New York, New York
  • Seattle, Washington

To learn more about ifetroban for systemic sclerosis (SSc), please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

 
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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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