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Scleroderma Foundation
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eLetter #863 | May 1, 2020  

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Scleroderma Education Videos on YouTube

A series of educational videos relating to scleroderma and COVID-19 are posted on the Foundation's YouTube channel under a play list titled "COVID-19."

The most recent addition is the recording of the April 24 webinar, Balancing your Immune System: a Special Webinar on Nutrition for Scleroderma Patients, featuring Elizabeth Volkmann, M.D., M.S., University of California, Los Angeles.

VIDEO

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Financial Assistance for Rare Disease Community Impacted by COVID-19

A financial assistance program for individuals who have rare diseases and are experiencing financial difficulty as a result of the COVID-19 public health crisis is available from NORD, the National Organization for Rare Disorders.

Eligible individuals can receive up to $1,000 in one year for essential expenses such as rent, mortgage, utilities, cellular service, Internet service, emergency repairs on home, car, and major appliances, and more.

To find out if you meet eligibility requirements and to apply for the NORD COVID-19 Critical Relief Program and to apply, please contact NORD: (203) 242‑0497, COVID19assistance@rarediseases.org

Awareness 2019 Recruit

Tell Your Story

You can help with the June scleroderma awareness campaign while you #StayatHome. Are you ready to share your story with the world? So few people know about scleroderma. Let the world get to know you, and help us raise awareness.

Send an email to our partners at Brogan & Partners Convergence Marketing.  Brogan & Partners has been a long-time collaborator with the Foundation, both nationally and with the Michigan Chapter.  

EMAIL

Virtual Stepping Out eLetter

stepping out walking for grandma

stepping out two women walking

What is a Virtual Fundraising Event?

A virtual fundraising event can be almost anything you want it to be. The important part is the fundraising, which includes "fun!"

  • Walk outside in your neighborhood (observing proper social distancing, of course) 
  • Walk inside your house
  • Run a 5K and time yourself (if you can run a 5K)
  • Ride a bicycle for an hour, or longer
  • Sit on your couch and watch a movie about other people walking ;-)
  • Go for a Sunday Drive

Whatever you do, post a selfie on social media with the hashtag #VirtualSteppingOut.

Some chapters will host an online event to bring everyone together to share their connection to scleroderma and to celebrate our common goal to overcome this life-threatening disease.

We all know it's not safe right now to get together in a crowd and take a walk. We also know that we need to keep our promise to people affected by scleroderma to provide the highest quality support, education, and research. To that end, many of the Scleroderma Foundation's Stepping Out walks and 5Ks have become exciting VIRTUAL fundraising experiences. 

The extraordinary circumstances that confront us all illustrate just how vulnerable individuals who have scleroderma are, and why we can't miss a step.

A list of walks that have changed to virtual fundraising events as of now are listed at www.scleroderma.org/steppingout.

Advocacy 2018 Capitol Hill Day Steinwandt 

Karen Steinwandt
Scleroderma Advocate

Ask Your Member of Congress to Support Scleroderma Research

We can take advantage of this down time to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research. You don’t need to leave home to make your voice heard.

Sign prepared letters asking your U.S. Representative and Senators to co-sponsor a bipartisan, budget-neutral bill that supports people living with all fibrotic diseases. Please complete both letters: H.R. 3446 (House), S. 2477 (Senate).

Complete the letters online and email them to advocacy@scleroderma.org. You can also print the letters and complete by hand. Scan and email them to advocacy@scleroderma.org or send by U.S. mail to Scleroderma Foundation; Attn: Advocacy; 300 Rosewood Drive, Suite 105; Danvers, MA 01923.

Encourage your family, friends, colleagues and neighbors to complete letters too. More voices send a louder message!

Inspire App 2020 May

Connect. Inspire. Be Inspired.

Individuals impacted by scleroderma can connect with others who understand what they are going through by joining the online scleroderma community via the Inspire iOS app, or by visiting the Scleroderma Foundation Support Community at Team Inspire.

INSPIRE

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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" will be updated as new information arises. Please check it from time to time.

COVID‑19

Sundar Balasubramanian

Sundar Balasubramanian, Ph.D., C.‑I.A.Y.T.

STaY Breathing!

Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of the ongoing Gentle Yoga & Yogic Breathing (GYYB) program for individuals who have scleroderma. 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, Sundar Balasubramanian, Ph.D., C.‑I.A.Y.T., is transforming the GYYB program into the telehealth mode so you can practice from home. Attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted.

You may choose to attend one or more webinars from the following dates, all occur at 11 a.m. Eastern Time:

  • May 2, 9, 16

WEBINAR

birthday cake cupcake

Celebrate Your Birthday!

Celebrate your birthday by raising money on Facebook to advance the Scleroderma Foundation's mission to provide support, education, and research.

100 percent of monies donated via Facebook fundraisers are passed on to the Scleroderma Foundation.  There are no fees. Birthday fudraisers are the most common, but you can create a Facebook fundraiser to benefit the Foundation for any reason you choose.  

FACEBOOK FUNDRAISING

Clinical Trial Opportunities

Safety and Tolerability Study of AVID200, a Novel TGF-beta 1 & 3 Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis

Several lines of evidence place TGF-β, a potent pro-fibrotic cytokine, at the center of the pathogenesis of systemic sclerosis (SSc). AVID200 is a novel inhibitor of TGF-β ligands.

AVID200-01 (NCT03831438)is a Phase 1 trial designed to evaluate the safety, tolerability, and preliminary efficacy of AVID200 in diffuse cutaneous systemic sclerosis (dcSSc) patients. Currently the trial is being conducted at four centers in the United States: University of Pittsburgh Medical Center, Hospital for Special Surgery, UCLA, and University of Pennsylvania, with more centers expected to be open soon.

To participate in the trial, the following minimum criteria must be met:

  • Be at least 18 years old
  • Be classified as having SSc with a total ≥ 9 according to the American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) criteria for the classification of SSc
  • Have diffuse cutaneous SSc (dcSSc) subset
  • Disease duration < 5 years since the onset of first SSc manifestations (other than Raynaud's phenomenon) at the time of enrollment
  • Have a MRSS ≥ 15, and with a score that has not decreased by > 5 points in the past 2 months (8 weeks)
  • Have a skin score ≥ 2 on at least one forearm
Read more at clinicaltrials.gov and www.forbius.com.

       

Clinical Trial News

Safety and Efficacy of Lenabasum in a Phase Two Randomized, Placebo-Controlled Trial in Adults with Systemic Sclerosis

Corbus Pharmaceuticals LogoThe peer-reviewed journal, Arthritis & Rheumatology, recently published the data from the phase two trial of lenabasum for treatment of adults with systemic sclerosis.  The authors conclude that lenabasum improved efficacy outcomes and underlying disease pathology with a favorable safety profile.  The company now looks forward to a phase three trial.  

ARTHRITIS & RHEUMATOLOGY

 
 
 
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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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