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eLetter #888 | October 23, 2020  

Scleroderma Virtual University Fall Series

Mary Crowe Care Dimensions
Mary Crowe, L.I.C.S.W.,
A.C.H.P.-S.W., C.D.S.

Making Decisions When It Matters Most: Conversations about Health Care Proxy, Five Wishes and More!

Scleroderma Virtual University Webinar
October 28, 3 - 4 p.m. Eastern (2 Central, 1 Mountain, 12 Pacific)

With Mary Crowe, L.I.C.S.W., A.C.H.P.-S.W., C.D.S., Care Dimensions

Join us for this program to discuss the importance of advance care planning and making one’s health care wishes known through use of "Five Wishes" and other planning tools.

REGISTER

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VIDEO: Coping with Both a Pandemic and Scleroderma

Watch the video recording of "Coping with Both a Pandemic and Scleroderma," presented by Lee Shapiro, M.D., Scleroderma Center at Albany Medical College; and Steffens Scleroderma Foundation.  Originally presented October 21, Dr. Shapiro discusses the impact of COVID-19on your health and healthcare and the adjustments that you can make. Part of the Scleroderma Virtual University patient education fall series.

WATCH

SYNC Meet Up Young Adults Tri-State 10-23

SYNC Meet Up

Scleroderma Young Adults Needing Connection
Scleroderma young adults ages 18-42 are invited to join the SYNC Meet Up on Friday, October 23, 2020 at 7 p.m. Eastern.

For meeting details, send an email to dtristate@sclerodermatristate.org or agietzen@scleroderma.org.

Ohio Sunday Sit Down

Sunday Sitdown

Facebook Live: October 25, 1 p.m. Eastern

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

Virtual Stepping Out eLetter

Keeping Our Promise While Staying Safe

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.

10/31 Boston, Massachusetts

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

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Virtual Support Groups

The pandemic might keep us inside, but it can't keep us away from each other. Many local support groups adapted to Zoom meetings and a few use the telephone. Find a list of scleroderma support groups on the Foundation's website and on your chapter's homepage.

SUPPORT GROUPS

Clinical Trial Opportunity

The AURORA Study logo

The AURORA Study

Are you living with systemic sclerosis and experiencing painful Raynaud's phenomenon attacks?

The main purpose of the AURORA Study is to evaluate the safety and effectiveness of the investigational study drug, iloprost, compared to placebo (which has no active ingredients) in decreasing the frequency and symptoms (pain, numbness, tingling, and discomfort) of symptomatic Raynaud’s phenomenon (RP) attacks in people with systemic sclerosis (SSc).  

Conducted by Eicos Sciences, the following are eligibility requirements to participate.

  • At least 18 years old
  • Have a diagnosis of SSc
  • Experiencing frequent symptomatic pain, numbness, tingling, and/or discomfort from Raynaud attacks.
Learn more about the study and how to participate by clicking the link below.

AURORA

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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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