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eLetter #867 | May 29 2020  

2020 Awareness Month Intro

June is Scleroderma Awareness Month!

June is Scleroderma Awareness Month—30 days dedicated to spreading the word and working toward a cure. Starting June 1, meet the many amazing faces of scleroderma and get to know their inspiring stories.

Visit sclerodermaaware.org to access the social media toolkit to bring attention to this rare disease. 

SCLERODERMAAWARE.ORG

National Day of Action logo

Speak Up for Scleroderma on Monday, June 29

Register now for our National Day of Action and join thousands of others across the country to ask members of Congress to support bills important to the scleroderma community. Join a 45-minute training video on June 22 (or watch it later), and you are ready. There’s no cost to participate. The bills important to the scleroderma community are budget neutral and have both Republican and Democrat support. As one advocate has said, adding your voice to this effort isn’t political, it’s personal. Register today and share the link with your friends and family.

REGISTER

 Michigan Parents Online Group June 2020

Parents of Children with Scleroderma

Online Support Group: June 3, 7:30-9 p.m. Eastern

Finding resources to help pay for the cost of your child’s medication and medical needs. From doctor appointments to medication and more, it can be hard to financially meet all your child’s scleroderma needs.

Join us for an online support group on June 3 from 7:30 - 9 p.m. to learn about resources and financial help available to you. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

REGISTER

 Ohio Sunday Sit Down

Sunday Sitdown

Facebook Live: May 31, 1 p.m. Eastern

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

Virtual Stepping Out eLetter

Vermont Stepping Out Hills Path

stepping out two women walking

Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise is our mission to provide support, education, and research.  In the words of CEO Robert Riggs, "As scary as it all may be, and as difficult and as sad as this is, this is not a time to step down. This is a time to step up, to dig deep, to get creative, and engage people in new ways to keep our community strong."

Going for a walk in a crowd is not safe right now. So the Foundation got creative and pivoted to virtual fundraising events. Fundraise, take a victory lap, and post a selfie on social media with the hashtag #VirtualSteppingOut.

June Fundraising Events:

STEPPING OUT 

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently updated on May 1. Please check it from time to time for additional updates.

COVID‑19

myPHteam path to diagnosis 

myPHteam

"It took 5 years for me to be diagnosed with pulmonary hypertension and by that time I was in pretty bad shape."

Share your diagnosis journey in the discussion on myPHteam.

PRESS RELEASE

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

Clinical Trial Updates

RESOLVE-1 Phase 3 Study of Lenabasum 

Corbus RESOLVE-1 Hero Shot wide

In a press release, Corbus Pharmaceuticals announced that the last subject completed their final visit in the Company’s RESOLVE-1 Phase 3 trial of lenabasum for the treatment of systemic sclerosis. Topline results from the study are on track for summer 2020.

PRESS RELEASE

ACR Open Rheumatology Publishes Results of Scleroderma Lung Study II

Treatment With Mycophenolate and Cyclophosphamide Leads to Clinically Meaningful Improvements in Patient‐Reported Outcomes in Scleroderma Lung Disease: Results of Scleroderma Lung Study II

Authors: Elizabeth R. Volkmann, M.D., M.S.; Donald P. Tashkin, M.D.; Holly LeClair, M.S.; Michael D. Roth, M.D.; Grace Kim, Ph.D.; Jonathan Goldin, M.D., Ph.D.; Philip J. Clements, M.D., M.P.H.; Daniel E. Furst, M.D.; Dinesh Khanna, M.D., M.S.

First published:20 May 2020; https://doi.org/10.1002/acr2.11125

The study drug (mycophenolate) and matching placebo were supplied at no charge through Drug Supply grant CEL539 from Hoffmann‐La Roche/Genentech. Dr. Volkmann’s work was supported by the Rheumatology Research Foundation (Scientist Development Award) and the Scleroderma Foundation (Young Investigator Award). Dr. Tashkin work was supported by grants from the National Heart, Lung, and Blood Institute, NIH (grants R01‐HL‐089758 and R01‐HL‐089901, respectively). Dr. Khanna’s work was supported by grants from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH (grants K24‐AR‐063120 and R01‐AR‐07047).

Dr. Volkmann is a consultant to Boehringer Ingelheim and Forbius. Dr. Khanna is a consultant to Acceleron, Actelion, Amgen, Bayer, Bristol‐Myers Squibb, Boehringer Ingelheim, CSL Behring, Corbus, Galapagos, Genentech/Roche, GlaxoSmithKline, Horizon, Merck, Mitsubishi Tanabe Pharma, Sanofi‐Aventis, and United Therapeutics, and he has stock options in Eicos Sciences, Inc. No other disclosures relevant to this article were reported.

READ MORE

 
 
 
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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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