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eLetter #847 | January 10, 2020  

Katie Kinson Say Yes to the Dress Gown

Katie Nicole 
©2020 Say Yes to the Dress


She Said "Yes to the Dress"

Katie Nicole of Evans, Georgia became a media sensation with her January 4, 2020, appearance on the popular television show Say Yes to the Dress America, with host Randy Fenoli on the Learning Channel (TLC).  In addition to her engaging and fun personality, Katie revealed her scleroderma diagnosis to the national audience.  Fans of the show responded with tremendous support for Katie through social media.  In one moment, Katie has elevated awareness of scleroderma and the physical and emotional struggle of individuals who have this disabling and life-threatening disease.  

Look for a feature article on Katie in the spring edition of Scleroderma Voice magazine, mailed to Foundation members in late February.  

VIDEO

US News & World Report


"A Patient's Guide to Raynaud's Syndrome"

U.S. News & World Report magazine published a guide for individuals who have Raynaud Syndrome that details types, causes, symptoms, diagnosis, treatments, health care providers, and related articles.  

Fredrick Wigley, M.D., a member of the Scleroderma Foundation's Medical & Scientific Advisory Board and professor of medicine and director of the Johns Hopkins Scleroderma Center in Baltimore, Maryland, is an author of the guide along with Marie Gerhard-Herman, M.D., and Rosalind Ramsey-Goldman, M.D.  

READ MORE

Calendar


What's Happening

Visit the calendar on the Scleroderma Foundation website to learn about upcoming events in your community.  Listings include support groups, fundraising events, and education programs.  

CALENDAR

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

Advocacy Cowan Tri-State

Bruce Cowan, Executive Director
Tri-State Chapter


"Everything in Life is Inter-Related"

Listen to Bruce Cowan, Executive Director of the Tri-State Chapter, talk about advocacy and its necessary role in advancing the mission of the Scleroderma Foundation. 

Cowan encourages everyone to engage in advocacy, specifically for the National Commission on Scleroderma and Fibrotic Diseases Act of 2019, a bipartisan and budget-neutral bill.  If enacted into law, it will coordinate research related to scleroderma and other fibrotic diseases--research that is already funded by the National Institutes of Health.  The bill exists in both the House (H.R. 3446) and the Senate (S. 2477).

Read the bill at scleroderma.org/advocacy, and find letters to your U.S. Representative and Senators asking them to become a cosponsor.  Your job is easy. Print, sign, scan, and email the letters back to the Foundation, advocacy@scleroderma.org. Or, mail them to Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923. All letters are hand-delivered to Capitol Hill.

VIDEO

PFF VIdeo 2020 David J Lederer MD


What is Pulmonary Fibrosis?

David J. Lederer, M.D., senior medical advisor for education and awareness for the Pulmonary Fibrosis Foundation, explains pulmonary fibrosis in a video.  The big picture of lung disease is vast and includes a family of diseases called interstitial lung diseases (ILD), which consist of more than 100 different diseases. These diseases are grouped together because they share two common features--inflammation and scar tissue, which occur in the walls of the tiny air sacs of the lungs.  ILD and pulmonary fibrosis are often associated with scleroderma.

VIDEO

Clinical Trial Opportunities

Belimumab and Rituximab Combination Therapy

Overview

  • This is a randomized, placebo-controlled trial, where patients will be randomized in a 2-to-1 fashion to treatment with rituximab 1000 mg every other week for two infusions followed by weekly belimumab (200 mg subcutaneously) or placebo infusions followed by weekly subcutaneous placebo injections
  • All patients will receive background mycophenolate mofetil
  • Study duration: 15 months

Inclusion Criteria

  • Age: 18-80 years
  • Classification of systemic sclerosis (SSc), as defined using the 2013 American College of Rheumatology/European Union League Against Rheumatism classification of SSc
  • Diffuse skin involvement
  • Disease duration of less than or equal to 3 years as defined by the date of onset of the first non-Raynaud’s symptom
  • A modified Rodnan Skin Score (mRSS) of > 14

HSS Hospital for Special Surgery logoExclusion Criteria

  • Prior use of B-cell depleting therapies
  • FVC < 45%
  • DLCO < 30%

CONTACT

Hospital for Special Surgery:

Liza Morales, Research Coordinator
(212) 774-2561, moralesli@hss.edu

Beemnet Amdemicael, Research Assistant
(212) 774-2048, amdemicaelb@hss.edu

 

SPIN Eating Well with Scleroderma Focus Group 2020

 
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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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