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Scleroderma Foundation
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eLetter #889 | October 30, 2020  

Coping with the Holidays in the Age of COVID-19

Coping with the Holidays in the Age of COVID−19

WEBINAR: Thursday, November 12, from 12:30 to 1:30 p.m. Eastern

Join presenters Juliette Kleinman, A.C.S.W., L.C.S.W. and Susan Rodriguez, L.C.S.W. from the Hospital for Special Surgery (HSS), and moderators Bruce Cowan, Tri-State Chapter Executive Director, and Elizabeth Soto-Cardona, M.P.H., Scleroderma, Vasculitis & Myositis Center at HSS, for a panel discussion.  Identify personal stressors during COVID-19 and the holiday season.  Learn strategies and resources for coping with holiday stress.  Develop self-care techniques to enhance your holiday experience during COVID-19.

REGISTER

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

Watch the video recording of "Making Decisions When It Matters Most: Conversations About Health Care Proxy, Five Wishes, and More!," a discussion with Mary Crowe, L.I.C.S.W., A.C.H.P.-S.W., C.D.S., of Care Dimensions. Originally presented October 28 as part of the Scleroderma Virtual University patient education fall series, this program discusses the importance of advance care planning and making one's health care wishes known through use of "Five Wishes" and other planning tools.

WATCH

Kaylee Renee Know the Face Frame Awareness 2020

Know the Face of Scleroderma

During Awareness Month, June 2020, a number of individuals who have scleroderma were highlighted on sclerodermaaware.org. They volunteered to tell their story to increase awareness of the disease. Each month, we will share one of their stories to keep the momentum going.

Kaylee Renee’s future looked limitless in 2019. At just 7 years old, she had become an ambassador for Justice, the popular girls’ clothing line, and was a social media influencer for young kids and tweens. Even at her young age, she recognized the importance of giving back and participated in charity events to benefit her hometown nursing home, fight childhood hunger in North Texas, and send supplies to U.S. service men and women. Read the rest of Kaylee's story at the link below.

READ

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November is National Family Caregivers Month

National Family Caregivers Month, celebrated each November, is a time to recognize and honor family caregivers across the country. The Caregiver Action Network's 2020 theme is "Caregiving in Crisis," which addresses the realities faced by family caregivers during these uncertain times. Set time aside this month to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

Caring for Rare Disease Caregivers

Rare Caregivers is a comprehensive online guide produced by the Caregiver Action Network that addresses the distinct needs of family caregivers of loved ones with rare diseases. Rare Caregiver’s resources provide caregivers with tips on helping their loved one as well as themselves.

RARE CAREGIVERS

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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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

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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