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eLetter #864 | May 8, 2020  

Saketkoo A Beautiful Place Webinar Graphic 

A Beautiful Place: Physical Health in Scleroderma Through the Mind Body Garden

Watch a recording of the May 1, 2020, webinar presented by Lesley Ann Saketkoo, M.D., M.P..H., Tulane University Medical School, regarding strategies to improve health through physical mindfulness practices that specifically target health and well-being while living with scleroderma during the time of COVID-19.

Collaboratively sponsored by the Scleroderma Foundation, the Scleroderma Research Foundation, and Scleroderma Canada.

VIDEO

 Sandy Beach Trees Stars

Sleep & COVID-19 Resources

The SLEEP-WAKE Research Center has published information regarding a number of topics relating to sleep and health within the context of COVID-19. 

Visit their website to read articles titled "Sleep and Immunity," "Sleep and Mental Health," Sleep for Older Adults," "Sleep for Parents and Babies," "Sleep for Teenagers," "Children's Sleep (Tips for Parents and Tips for Children)," "Sleep Shift Workers," and "General Sleep and Circadian Health." Each article is available as a PDF for download. 

SLEEP

stepping out walking for grandma

Virtual Stepping Out eLetter

Keeping Our Promise

The promise the Scleroderma Foundation made to everyone affected by scleroderma 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.

STEPPING OUT 

 Julian Capitol eletter

Julia Ceresnak and her father, Scott, Capitol Hill Day 2019

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!

Ticket to Work - WISE

Will I Continue to Receive My Social Security Disability Benefit?

Choosework, the Social Security Administration's office that helps individuals receiving SSDI and SSI understand the options available to them to earn additional income, published a blog recently to address questions about the impact the coronavirus might have on Social Security disability benefits.

BLOG

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" 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 9, 16

WEBINAR

Clinical Trial Opportunities

Cumberland Pharmaceuticals ifetroban trial

Aiming to Prevent Cardiomyopathy

If you are an adult with systemic sclerosis, you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug, called ifetroban, to determine if symptoms improve. Eligible subjects will be reimbursed for their time and travel. Trial Locations:

  • Baltimore, Maryland
  • Boston, Massachusetts
  • Charleston, South Carolina
  • Dallas, Texas
  • Los Angeles, California
  • New York, New York
  • Seattle, Washington

To learn more about ifetroban for systemic sclerosis (SSc), please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

 

 
 
 
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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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