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Scleroderma Foundation
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eLetter #896 | December 18, 2020  
Calendar

Holiday Schedule

The schedule for the eLetter over the next two weeks will adjust to free up your inbox during this hoiday time.  Instead of Fridays, the eLetter will be distributed on Wednesday, December 23 and Saturday, January 2.

Also, please note that the Foundation's national office will be closed on Friday, December 25 and Friday, January 1, in observance of the holidays.

Remember that you can find a wealth of information and resources on www.scleroderma.org. And, don't forget to like us on Facebook, and follow up on Twitter and Instagram.

HAPPY HOLIDAYS!

SYNC Meet Up Young Adults Tri-State December 2020

SYNC Meet Up

ONLINE: Friday, December 18, 2020; 4 p.m. Pacific Time (5 p.m. MT, 6 p.m. CT, 7 p.m. ET)

Young adults between the ages of 18 and 42 are invited to attend the SYNC Meet Up, a virtual meeting hosted by the Scleroderma Young Adults Needing Connection (SYNC) group. The group meets monthly.

To request the meeting link, send an email to agietzen@scleroderma.org or to sdtristate@sclerodermatristate.org.

 Lap Top Little Guy

Young Adult Panel: Managing Your Disabilities and Knowing Your Physical and Emotional Limits

WEBINAR: Saturday, December 19, 2020; 7 p.m. - 8:30 p.m. Eastern Time (6 p.m. CT, 5 p.m. MT, 4 p.m. PT)

Join a panel of young adults in discussing topics such as managing your disabilities and knowing your physical and emotional limits. The panel also talks about what it feels like to be treated poorly or differently because you may not look "sick."

REGISTER

emotional help

University of Michigan Ginsberg Center

How Does the Scleroderma Foundation Address Mental Health?

You can play an important part in answering that question by completing a brief survey (seven minutes) created in partnership with the Foundation's Michigan Chapter and the Ginsburg Center at the University of Michigan.

Your responses are a first step towards creating resources to address the mental health needs of the scleroderma community and to establish partnerships with local providers across the country.

Survey responses are requested by January 15, 2021. Anyone 18 years and older, who has been diagnosed with scleroderma may participate. If you have any questions about the survey, please contact Laura Dyas: LDyas@scleroderma.org.

TAKE THE SURVEY

2019 DFW Stomp Out Scleroderma - Briana

Stomp Out Scleroderma!

Only 13 days till December 31...have you made your end of calendar year gift yet?

If not, please consider supporting the Scleroderma Foundation. Together we can stomp out scleroderma!

Make your charitable donation here.

Creaky Joints COVID 19 Vaccine

Vaccines & COVID-19

Our colleagues at Creaky Joints posted (12/14/20) an article on their website regarding vaccines and COVID-19 for people who are immunocompromised. Read the full article for helpful background.

READ

COVID Mayo Clinic Arizona Griffing Leroy 2020 12 15

Scleroderma & COVID-19

Watch a video presentation on the effects of COVID-19 on individuals with scleroderma and other rheumatic illnesses by Leroy Griffing, M.D., Director of the Mayo Clinic Arizona Scleroderma Program, recorded on December 15, 2020.

VIDEO

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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

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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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