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eLetter #876 | July 31, 2020  

 SF Virtual University Summer Series Logo

 Jerry Molitor MD PhD square
Jerry Molitor, M.D., Ph..

Scleroderma Lung Disease
Jerry Molitor, M.D., Ph.D., University of Minnesota Medical School

Virtual University, Patient Education Summer Series
WEBINAR: August 5, 3 - 4 p.m. Eastern Time

You won't have to apply for a student loan to attend the Scleroderma Virtual University, just sign up! Join us for the next webinar in the patient education summer series: Scleroderma Lung Disease, with Jerry Molitor, M.D., Ph.D., University of Minnesota Medical School.

The lungs are potentially affected in all patients with systemic scleroderma. Patients need to know how they can be proactive in helping the doctors identify any lung involvement as early as possible. We will review these important complications of scleroderma and the newer treatments.

REGISTER

 YouTube 2020 Virtual University July 29

Virtual University Webinar Recording

VIDEO: How to Navigate Going Back to College in the Age of COVID-19, with Sneha Dave, founder and executive director of Health Advocacy Summit. Originally aired July 29 as part of the Scleroderma Foundation's Virtual University, Patient Education Summer Series. Every Virtual University presentation is recorded and posted to the Foundation's YouTube channel, which can be accessed via the link below.

scleroderma.org/summerseriesvideos

 Michigan Parents Online Group August 2020

Helping Your Child Adjust to a New School Year

Parents of Children with Scleroderma, Online Support Group: August 5, 7:30 p.m. to 9:00 p.m. Eastern

Heading back to school can be both exciting and nerve-wracking. If you and your child have the right tools, it can be a more seamless experience. Join an online support group on August 5 from 7:30 p.m. to 9:00 p.m. to learn tips and tricks for this back-to-school season. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

ZOOM

Wendy Sue Polonsky Know the Face Profile Awareness Month 

Know the Face of Scleroderma

The effort to generate awareness and understanding about scleroderma doesn't end on June 30.  Each month, this eLetter will feature the profile of an individual who was featured during awareness month. 

Scleroderma has affected Wendy Sue Polonsky’s life in more ways than one. But, one way in particular has proved to be especially challenging.

“I had to adjust to putting my needs first,” she said. “That’s something I had never done before.”

Read the rest of Wendy's profile at SclerodermaAware.org.

2018 Capitol Hill Day Dee Burlile

Advocacy 2018 Capitol Hill Day Todd Gilligan

Ask Your Member of Congress to Support Scleroderma Research

You don't need to leave home to make your voice heard! Take advantage of this time at home to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research.

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 to send a louder message!

 Virtual Stepping Out eLetter

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Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise 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. And remember, donations are accepted for at least 30 days after the event and longer in many cases.

August Virtual Fundraising Events:

STEPPING OUT

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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

Clinical Trial Opportunity

Phase 2a Study of EHP-101

Emerald Health Pharmaceuticals logoEmerald Health Pharmaceuticals Inc. (EHP), a clinical-stage biotechnology company developing a new class of medicines to treat diseases with unmet medical needs, continues to advance its Phase 2a clinical study of EHP-101, an oral formulation of a patented new chemical entity derived from cannabidiol (CBD) being developed for the treatment of systemic sclerosis (SSc), a severe, debilitating and life-threatening form of scleroderma, and multiple sclerosis (MS).

PRESS RELEASE 


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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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