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eLetter #871 | June 26, 2020  

World Scleroderma Day 2020 Awareness Month

June 29 is World Scleroderma Day

Monday, June 29 is World Scleroderma Day a day dedicated to getting loud, spreading the word and raising awareness.

Speak up and spread the word about the faces of scleroderma.

SCLERODERMAAWARE

National Day of Action logo

Advocacy Demi Senator Portman Capitol Hill Day

Sign Up for National Day of Action, June 29

It's not too late! Register for the Scleroderma Foundation's National Day of Action and commemorate World Scleroderma Day by joining thousands of others across the country asking members of Congress to support bills important to the scleroderma community.

Get ready by watching a training webinar. 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 friends and family.

REGISTER - LEARN MORE

 Lia Young Awareness Month 2020

Lia Young, Dx 2014

Know the Face of Scleroderma

Lia Young, Diagnosed 2014

During June, to celebrate Scleroderma Awareness Month, the eLetter will feature individuals whose lives were changed by scleroderma.

After three years of being treated for pneumonia, Lia Young was diagnosed with scleroderma and interstitial lung disease in January 2014. She was only 35 years old, with five children and an insignificant medical history, when she discovered she’d need a double lung transplant. Read Lia's story.

SCLERODERMAAWARE

SOCIAL MEDIA TOOLKIT

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Patient Education Summer Series

The Scleroderma Foundation is proud to announce our upcoming Patient Education Summer Series. In lieu of the National Patient Education Conference that sadly was canceled to protect individuals with scleroderma during the COVID-19 pandemic, the Foundation has adapted its programming to the virtual environment. The Foundation will present an exciting series of weekly webinars, live meetings, workshops, and Scleroderma-related patient education videos. These weekly Wednesday events will cover everything from managing symptoms to everyday living advice from individuals with scleroderma, physicians, and specialists.

The program launches Wednesday, July 8 at 3 p.m. with a very timely topic, telemedicine. More information and registration details will be announced next week via this eLetter, on social media, and on scleroderma.org.

 CARRA Registry Newsletter SCORE Spring 2020

SCORE Launched to Understand Biology of Pediatric Scleroderma

CARRA Registry, a publication of the Childhood Arthritis and Rheumatology Research Alliance, reported in its Spring 2020 newsletter on the launch of SCORE, the Scleroderma Collaborate Research project.  The purpose of the project is to identify juvenile scleroderma immunophenotype subsets. 

Patient enrollment has begun across 19 CARRA sites in North America. Participation criteria apply.  

Find a SCORE registry site

READ   

Alexander Gobel Lemonade Stand 

When Life Gives Your Nana Lemons...

You set up a lemonade stand!  When seven-year-old Alexander from Missouri heard that his Nana had scleroderma and that she was vulnerable to the worst case symptoms of COVID-19, he marked June 1 on the family calendar to run a lemonade stand.  He told family and friends he was raising money to help cure his Nana and they responded with $615 of love and support. 

THANK YOU, ALEXANDER!! The Foundation is deeply grateful for your resourceful and thoughtful fundraising. 

You can follow Alexander's lead.  Be a HopeRaiser and help overcome scleroderma forever.   

Ohio Sunday Sit Down

Lucille Miller, Sunday Sitdown Host

Sunday Sitdown

Facebook Live: Junen 28, 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

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 

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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 difficulty breathing

myPHteam

When you have Pulmonary Hypertension shortness of breath and chest pain can be uncomfortable and anxiety-producing. How do you manage difficulties with breathing? Give and get answers with myPHteam.

myPHteam

Clinical Trial Opportunity

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

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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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