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eLetter #870 | June 19, 2020  

National Day of Action logo

Speak Up for Scleroderma, Monday, June 29

Register now for our National Day of Action and join thousands of others across the country to ask members of Congress to support bills important to the scleroderma community. Join a 45-minute training webinar on June 22 (or watch it later), and you'll be ready. There’s no cost to participate. The bills important to the scleroderma community are budget neutral and have both Republican and Democrat support. As one advocate has said, "adding your voice to this effort isn’t political, it’s personal." Register today and share the link with your friends and family.

REGISTER - LEARN MORE

 Kheesa Jones Know the Face Awareness Month 2020

Kheesa Jones, Dx 2006

Know the Face of Scleroderma

Kheesa Jones, Diagnosed 2006

During June, to celebrate Scleroderma Awareness Month, the eLetter will feature individuals whose lives were changed by scleroderma.

Kheesa Jones started having symptoms she couldn't explain in 2005. But she wouldn't discover her diagnosis until the following year--after the birth of her first child. Read this "Scleroderma Warrior's" story on sclerodermaaware.org.

READ MORE - SOCIAL MEDIA TOOLKIT

 Inspire What Patients Can Teach Us

What Patients Can Teach Us About Living With Uncertainty

A Healing Story Session, June 22, 4 - 5:15 p.m. Eastern

Register now for "What Patients Can Teach Us About Living with Uncertainty: A Healing Story Session," a free online educational event co-hosted by Health Story Collaborative, Inspire and the Society for Participatory Medicine.

LEARN MORE

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 United Therapeutics PAH Initiative
 

 Health Advocacy Summit Keep High-Risk Students Safe

How to Navigate Going Back to College in the Age of COVID-19

Many vulnerable students are concerned about the upcoming Fall 2020 semester due to the ongoing global pandemic. The Health Advocacy Summit has compiled some resources and tips for students with chronic medical disabilities or chronic illnesses.

LEARN MORE

Yoga for Scleroderma Wednesday Wind Down

Wednesday Wind-Down

Free Weekly Guided Relaxation

Wednesdays, 6:30 p.m. Eastern (5:30 CT, 3:30 PT)

Presented by Yoga for Scleroderma, you can access this program using only a phone.  No internet necessary.  Call 1-669-900-6833 and enter meeting ID 82635317704.

You may also access the program via Zoom:
 https://us02web.zoom.us/j/82635317704

Ticket to Work - WISE

Ticket to Work

WEBINAR: June 24, 3 p.m. Eastern

How can work affect your mental health? Work offers you the opportunity to use your skills and talents, while new accomplishments boost your self-confidence.

If you’re wondering if work is right for you, Ticket to Work (Ticket) program service providers can help you explore your work options. Join ChooseWork on June 24 at 3 p.m. ET for the next Work Incentive Seminar Event (WISE) webinar to learn how Social Security’s Ticket program can support you on your path to employment.

ChooseWork

Virtual Stepping Out eLetter

Vermont Stepping Out Hills Path

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.

June Fundraising Events:

STEPPING OUT 

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" was most recently updated on May 1. Please check it from time to time for additional updates.

COVID‑19

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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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