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Scleroderma Foundation
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eLetter #859 | April 3, 2020  

COVID-19 Frech SRF Can SF Video

 

Recording of March 27 Webinar, "Staying Well During COVID-19"

Watch the recording of the March 27 webinar, Staying Well During COVID-19, with Tracy Frech, M.D., M.S., director of the Systemic Sclerosis Clinic, University of Utah.

Presented by the Scleroderma Research Foundation, the Scleroderma Foundation, and Scleroderma Canada.

VIDEO

MSAB COVID-19 eLetter Graphic

 

Updated COVID-19 Information & Recommendations

On March 30, an updated advisory regarding COVID−19 was posted to scleroderma.org. This statement is a "living document" that will be updated as new information becomes available. Please check it from time to time.

The Spanish-language version of the advisory was also updated and the juvenile scleroderma & COVID-19 advisory was newly translated into Spanish.

UPDATES:

  • 3/31 Juvenile Scleroderma Advisory Spanish Language Version
  • 3/30 Scleroderma & COVID-19 Information & Recommendations from MSAB
  • 3/30 Spanish Language Version
  • 3/27 Webinar Recording, Dr. Frech
  • 3/25 Webinar Recording, Dr. Assassi
  • 3/21 Video Forum Recording, SPIN

COVID-19 Statement

 Pulmonary Disease and Scleroderma Video 2017 K Akaya Smith M

 

Video: Pulmonary Disease and Scleroderma

Watch "Pulmonary Disease and Scleroderma," presented by Kerri Akaya Smith, M.D., medical director, Pulmonary Hypertension Program, Hospital of the University of Pennsylvania, recorded March 2017 during a Joint Chapter Forum hosted by the Delaware Valley and Tri-State chapters.

VIDEO

Emergency Medical Information Kit PDF 

 

Be Prepared

If you experience a personal medical emergency, communicating quickly, efficiently, and effectively about your scleroderma with first responders and other emergency medical personnel is essential to receiving proper care. Even when the urgent situation is not scleroderma-related, it is still an underlying condition that makes a difference in medical care.

Download a PDF of the emergency medical information kit prepared by the Scleroderma Foundation, fill it out and keep it handy in case of emergency.  

DOWNLOAD

Sundar Balasubramanian

 

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, Dr. Sundar Balasubramanian 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:

  • April 4, 11, 18, 25
  • May 2, 9, 16

WEBINAR

Virtual Stepping Out eLetter

 

Step Out to Cure Scleroderma Virtually!

To stay safe under CDC guidelines and to keep our promise to provide life-changing support, education, and research for everyone affected by scleroderma, many of the Scleroderma Foundation's Stepping Out walks and 5Ks will become exciting VIRTUAL fundraising experiences.

The extraordinary circumstances that we all currently face illustrate the extreme vulnerability of individuals who have scleroderma, and why we can't miss a step.

A list of walks that are changing to virtual fundraising events will be published shortly. You may also contact your local chapter to learn their plans.

STEPPING OUT

Clinical Trial Opportunity

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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