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eLetter #875 | July 24, 2020  

 SF Virtual University Summer Series Logo

 Sneha Dave Health Advocacy Summit
Sneha Dave

How to Navigate Going Back to College in the Age of COVID-19
Sneha Dave, Founder & Executive Director
Health Advocacy Summit

Virtual University, Patient Education Summer Series
WEBINAR: July 29, 3 - 4 p.m. Eastern Time

Many vulnerable students are concerned about the upcoming fall 2020 semester because of the ongoing pandemic.

The Health Advocacy Summit has compiled resources and tips for students with chronic medical disabilities or chronic illnesses.

Join us to learn about them!

REGISTER

SF University July 22 Harper Cannabis YouTube

Virtual University July 22 Webinar Recording

VIDEO: Cannabis Conundrum: Weighing the Pros and Cons of THC, CBD, and Related Compounds in Scleroderma, with JoAnna Harper, Pharm.D., R.Ph., CEO of Pain Partners, LLC. July 22 presentation of the Scleroderma Foundation's Virtual University, Patient Education Summer Series. Every Virtual University presentation will be recorded and posted to the Foundation's YouTube channel, which you can access via the link below.

scleroderma.org/summerseriesvideos

 Michigan Parents Online Group August 2020

Helping Your Child Adjust to a New School Year

Parents of Children with Scleroderma, Online Support Group: August 5, 7:30 p.m. to 9:00 p.m. Eastern

Heading back to school can be both exciting and nerve-wracking. If you and your child have the right tools, it can be a more seamless experience. Join an online support group on August 5 from 7:30 p.m. to 9:00 p.m. to learn tips and tricks for this back-to-school season. 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.

ZOOM

SPIN Share graphic

SPIN-SHARE: Supporting People Living with Scleroderma

The Scleroderma Patient-centered Intervention Network (SPIN) is taking another step towards fulfilling its mission of supporting people living with scleroderma from around the world! SPIN is thrilled to announce the launch of the SPIN-SHARE platform, through which toolkits will be released publicly after being tested through the SPIN Cohort.

To have access to SPIN online toolkits, login or register at: tools.spinsclero.com. SPIN Cohort users can login directly and public users will need to register first, in 4 easy steps.

SPIN-HAND graphic

SPIN-HAND: SPIN's First Publicly Accessible Toolkit for Hand Function

The first publicly accessible SPIN toolkit, SPIN-HAND, is now available online through the new SPIN-SHARE platform. Once you login to the SPIN-SHARE platform, you will see the SPIN-HAND toolkit. The HAND program provides different levels of exercises to improve hand function with sections to help you develop a personalized program, set goals, and track your progress. Instructional videos demonstrate how to perform each exercise properly with pictures to illustrate common mistakes.

More toolkits will be made available in 2021! Click here to register now: https://tools.spinsclero.com/.

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United Therapeutics PAH Initiative
 

Ohio Sunday Sit Down
Lucille Miller

Sunday Sitdown

Facebook Live: July 26, 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

walk couple dog masks trees

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. And remember, donations are accepted for at least 30 days after the event and longer in many cases.

July & August Virtual 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
Reviewed July 1

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 reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

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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