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Scleroderma Foundation
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eLetter #878 | August 14, 2020  

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David Leader
David Leader, D.M.D., M.P.H.

Scleroderma, Oral Health, and You
Virtual University Webinar:
August 19, 3 - 4 p.m. Eastern

Join us Wednesday, August 19 for "What Do Your Dentists and Your Physicians Want You to Know About Scleroderma, Oral Health, and You?", presented by David Leader, D.M.D., M.P.H., Tufts University School of Dental Medicine, as part of the Scleroderma Virtual University patient education summer series.

Dr. Leader will talk about the effect scleroderma has on your oral health. He will also indicate what information your dentist and your physicians need to know about you so they may best help you maintain and improve your oral health.

This presentation includes information and advice that you will be able to use the next day.

REGISTER

surgical masks

But Which Mask?

Read an article by Jennifer L.W. Fink, R.N., B.S.N. on Healthgrades.com to understand the differences among different types of masks and face coverings and the varying levels of protection that they offer the wearer and those around them from the coronavirus COVID-19.  

READ

LA Times Uncertainty Graphic
Illustration by Micah Fluellen, Los Angeles Times

Seven Ideas for Managing Uncertainty

Read an article from the August 6 edition of the Los Angeles Times, written by Joe Robinson, regarding the uncertainty of life during the coronavirus pandemic.  Mr. Robinson looks at the stress related to uncertainty and shares seven ways of dealing that stress.  He emphasizes that we are resilient and throughout human history have rebounded from crises and thrived.  

READ

 myPHteam a good day with PH

What Does a Good Day Look Like With PH?

A good day with PH is a wonderful thing. Sometimes it's getting out of the house for a walk or just feeling not so run-down. Share your vision of a good day in the discussion on myPHteam.

myPHteam

2020 Scleroderma Canada Virtual Conference October

Scleroderma Canada Virtual Conference

Our northern neighbors, Scleroderma Canada, restructured their biannual gathering into a virtual conference taking place October 5 - 9, 2020. Gain insight from researchers, physicians, and professional caregivers in 15 sessions, including 3 keynote speakers for $35 (Canadian). Early bird pricing runs until September 15th.

REGISTER

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United Therapeutics PAH Initiative
 

stepping out two women walking

Virtual Stepping Out eLetter

Keeping Our Promise

You can help the Scleroderma Foundation keep the promise it made to everyone affected by scleroderma to provide the best emotional support, educational programs, and peer-reviewed research.  

We can't miss a step because everyone is counting on us, but we need your help.  Stay safe at home and fundraise virtually with effective online fundraising tools.  Sign up today for a virtual fundraising event.  

August & September Virtual Fundraising Events:

STEPPING OUT

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 fundraisers are the most common, but you can create a Facebook fundraiser to benefit the Foundation for any reason you choose.  

FACEBOOK FUNDRAISING

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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

boehringer more than scleroderma kheesa

More than Scleroderma

A series of six scleroderma education webinar programs are being hosted nationally in August and September by one of the Scleroderma Foundation's partners, Boehringer Ingelheim. These programs are free and open to individuals affected by scleroderma and their family and friends. The Foundation is not managing registration and is not responsible for the content. When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

Webinar Dates (all times Eastern):

  • Wednesday, August 19, 5:30 p.m.
  • Thursday, August 27, 4 p.m.
  • Monday, September 14, 6 p.m.
  • Wednesday, September 16, 7 p.m.
  • Wednesday, September 23, 3 p.m.

CLICK HERE to register or CALL (855) 415-7492

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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