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eLetter #857 | March 20, 2020  

Robert Riggs, CEOA Message from Scleroderma Foundation CEO, Robert J. Riggs

Dear Foundation Members, Friends and Supporters:

We are all being advised and required by government authorities to change our regular routines, which impacts every aspect of our lives. The interconnectedness of our world, our nation, and our communities has, perhaps, never been more evident than now. Yet, in these challenging times, we are reminded that people throughout history have overcome adversity by forgoing what is normal daily activity and embracing changes and sacrifices that will ultimately benefit us all.

The Scleroderma Foundation is with you through this difficult period as we explore and employ new ways to meet our mission. We will be enhancing our online educational programs; continuing our work to advance awareness of scleroderma and its impact on patients and families; and we remain constant in our commitment to research. Our 2020 research grants, and those awarded in previous years that are already in progress, continue to be funded in order to maintain the momentum we see in scientific advancement.

The leadership of our Medical & Scientific Advisory Board is in daily contact with the Foundation’s national office team to ensure that the best information and emerging knowledge is available to our community regarding the COVID-19 pandemic and how best to protect the most vulnerable of those in our scleroderma family. Our global scleroderma patient organization partners are also working in concert to share information.

Changes are required of us all. Foundation support group meetings, patient education events and fundraisers have been cancelled at least through the end of April, and we will communicate further changes as required in this critical time. It’s important that our community take steps now to ensure the safety of ourselves and our families. Please read and follow the guidelines we’ve updated today.

Rest assured, the work of the Scleroderma Foundation continues much thanks to our volunteers, chapter and support group leaders, our national office team, the National Board of Directors and the Medical & Scientific Advisory Board, all of whom are committed to advancing our mission.

Thank you for your ongoing support as we face these challenging times together.

Gratefully,
Robert Riggs Signature first name
Robert J. Riggs
Chief Executive Officer

 Rod of Asclepius Medical Symbol

 

URGENT: Individuals with Systemic Sclerosis Advised to Self-Isolate at Home for Next 15 Days

In an update issued today, March 20, the Leadership Committee of the Scleroderma Foundation's Medical & Scientific Advisory Board, advised individuals with systemic sclerosis, especially those who are on immunosuppression treatments, or who have lung disease, to self-isolate at home for the next 15 days.

Read the full statement online.

COVID-19 & Scleroderma

COVID-19 Video forum SPIN crop

 

COVID-19 & Scleroderma: A Conversation with the Experts

VIDEOFORUM, March 21, 11 a.m. - 2 p.m. Eastern

Talk with five scleroderma experts about COVID-19 and its impact on individuals who have scleroderma.
Log in: www.gotomeet.me/SPIN-SSLED
Access code: 575-114-197; max capacity 250 attendees

Ask questions live by typing them into the chat panel, or submit questions in advance.

Step-by-step guide to join

To watch a recording of the videoforum later, go to www.spinsclero.com.

  • Maureen Sauvé: SPIN Patient Advisory Board and Steering Committee.
  • Dr. Janet Pope: Western University, London, Ontario
  • Dr. John Varga: Northwestern University Scleroderma Program, Chicago, Illinois
  • Dr. Donald Sheppard: McGill University, Montreal, Quebec
  • Dr. Brett Thombs: McGill University, Montreal, Quebec; SPIN

Presented by SPIN (Scleroderma Patient-centered Intervention Network) in sponsorship with the Scleroderma Society of Ontario, Scleroderma Canada, the Scleroderma Research Foundation, and the Scleroderma Foundation.

2015 ATS PAR image

 

Lung Involvement in Scleroderma

WEBINAR: Wednesday, March 25, 2 - 3 p.m. Eastern

As part of Scleroderma Week at the ATS and in conjunction with Public Advisory Roundtable (PAR) partner the Scleroderma Foundation, the American Thoracic Society will host a webinar on lung involvement in scleroderma, presented by Shervin Assassi, M.D. of the University of Texas Health Science Center at Houston.

WEBINAR

Ticket to Work - WISE 2018

 

Expanding Your Job Search with Ticket to Work

WEBINAR: Wednesday, March 25, 3 - 4:30 p.m. Eastern

Looking for a job? If you receive Social Security disability benefits, discover FREE employment supports available through Ticket to Work that can help people with disabilities develop a career. Join Choose Work for the next Work Incentive Seminar Event (WISE) webinar, March 25 at 3 p.m. ET, to learn more apprenticeships, working for the federal government, and how Social Security’s Ticket to Work program can help you advance your job search.

WEBINAR

Sundar Balasubramanian

 

STaY Breathing!

Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of our ongoing Gentle Yoga and Yogic Breathing (GYYB) program for scleroderma patients. In the current environment of COVID-19 it is important to minimize exposure, which is especially relevant to those who have scleroderma. At the same time, keeping up with good exercise is the key to better health and symptom management. With this in mind, Dr. Sundar Balasubramanian is transforming the GYYB program into the telehealth mode so participants can join and practice from their homes. At this point, attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted.

You can choose to attend or more webinars on the following dates, all at 11 a.m. Eastern Time:

  • March 21
  • March 28
  • April 4
  • April 11
  • April 18
  • April 25
  • May 2
  • May 9
  • May 16

WEBINAR

Female Senior Health stock photo 

 

Pulmonary Wellness Bootcamp

The Pulmonary Wellness Foundation is offering free access to an online pulmonary rehabilitation program and timely information. Especially during this time of social distancing, individuals who have a respiratory disease need to take extra precautions at the same time they need to improve their health. Access to pulmonary rehabilitative services can be a challenge for some because of the risk and expense associated with travel to a clinic.

According to the Pulmonary Wellness Foundation, "Bootcamp 101 is a six-week online pulmonary rehabilitation program that is ideal for any individual living with respiratory and/or cardiovascular disease. The program's highly effective and prove therapies are specifically formulated to alleviate the symptoms of Asthma, Chronic Obstructive Pulmonary Disease (COPD), Pulmonary Fibrosis (PF), Interstitial Lung Disease, scleroderma, Pulmonary Hypertension (PH), and more.

LEARN MORE

More than Scleroderma Boehringer Ingelheim

More than Scleroderma Boehringer Ingelheim Jovana

 

More than Scleroderma

Due to the potential travel and transmission risks associated with the COVID-19 coronavirus, the More Than Scleroderma Live Educational Events will be postponed at this time.

Boehringer Ingelheim, Inc. is committed to the health and safety of all registrants and has decided to take this precaution to minimize any risk to our guests and speakers.

More than Scleroderma is a series of scleroderma education programs offered in different locations around the country by Boehringer Ingelheim, a partner of the Scleroderma Foundation. These programs are free and open to individuals affected by scleroderma and their family and friends.

Thank you so much for your patience and continued interest in the More Than Scleroderma Live Educational Program. To learn more, call (855) 415-7492.

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
Exclusion 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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