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Scleroderma Foundation
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eLetter #906 | February 26, 2021  

 Rare Disease Day SF Logo Picture Frame 2021

Scleroderma is a Rare Disease

Supporting the Scleroderma Foundation on Rare Disease Day helps us to deliver support and education for those living with the disease, while we fund critical research to discover the cause, understand the mechanism, and overcome scleroderma forever. 

To help us continue our work, please consider making a donation on scleroderma.org.

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Rare Disease Day 2021 Equity

Rare Disease Day - Advocating for Equity

What equity means for people living with a rare disease? Equity in practice means meeting people’s specific needs and eliminating barriers preventing their full participation in society. For people living with a rare disease equity means social opportunity, equitable access to health and social care, diagnosis and treatment. 

On Rare Disease Day, February 28, we call for action for people living with a rare disease to have equal opportunities to realize their potential for participation in family, work and social life. The long-term goal of Rare Disease Day over the next decade is increased equity for people living with a rare disease and their families.

LEARN

 Beyond Breathless Boehringer Ingelheim

Beyond Breathless on Rare Disease Day

TV: Sunday, February 28, 12 p.m. ET. on A&E

Queen Latifah and New York Yankees legend Bernie Williams share a unique connection: both lost a parent to interstitial lung disease (ILD), a group of serious lung diseases that may cause irreversible scarring of the lungs and make it difficult to breathe. A new documentary, Beyond Breathless, spotlights the journey of those impacted by the rare lung diseases that took their parents’ lives—from symptoms and diagnosis to acceptance—through the real experiences of those living with an ILD, including those living with scleroderma-ILD.

WATCH

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Take Action

Congress designated $5 million exclusively for scleroderma research for the first time in 2020 and again in 2021. This research funding only happened because people across the country whose lives and families are adversely affected by this disease asked their member of Congress to support this funding.

We need Congress to approve scleroderma research funding for 2022, and your voice can help make this happen again. In recognition of Rare Disease Day, please take a few minutes to contact your U.S. Senators and Representative. Find a sample letter on the Scleroderma Foundation's website.

Please share this announcement with your family and friends.

ADVOCACY

Texas Education Doctors 2021 February

Virtual Scleroderma Education Day - Texas

WEBINAR: Saturday, February 27, 2021
9 a.m. - 5 p.m. Central Time

The Foundation's Texas Bluebonnet Chapter is hosting a virtual education day on Saturday, February 27, with six presenters plus a youth/young adult panel discussion. The webinar takes place via GoToWebinar and is open to all.

Speakers include four members of the chapter's Medical Advisory Board. From the Houston Scleroderma Center: Maureen Mayes, M.D., M.P.H., and Shervin Assassi, M.D., M.S. From the UT Southwestern Medical Center in Dallas: Fernando Torres, M.D., Pulmonologist and Director of Lung Transplant Center, and Heidi Jacobe, M.D., Dermatologist. From Tulane University School of Medicine in Louisiana: Lesley Ann Saketkoo, M.D., M.P.H. And, Ginny Maril, Ph.D., Licensed Psychologist from Austin.

REGISTER

Dr. Julianna Desmarais, M.D.

Scleroderma 101 for Newly Diagnosed

WEBINAR: Saturday, February 27, 2021
10 a.m. - 11 a.m. Pacific Time

The Foundation's Oregon Chapter is offering a webinar for individuals newly diagnosed with scleroderma. The presenter is Julianna Desmarais, M.D., a general rheumatologist at OHSU (Oregon Health & Science University) and an Assistant Professor of Medicine at OHSU's Division of Arthritis and Rheumatic Diseases. This webinar is also a great primer for those with long-term diagnosis also. There will be time for questions at the end of the presentation.

The webinar takes place via Zoom, and everyone is welcome to attend, especially our friends in Alaska! To receive the Zoom meeting information, send an email to the chapter at the link below.

ZOOM INFO

HSS COVID Vaccine

COVID-19 Vaccine and Autoimmune Conditions: FAQs

WEBINAR: Friday, March 5, 2021
2 p.m. - 3 p.m. Eastern Time

The Hospital for Special Surgery, in collaboration with the Scleroderma Foundation Tri-State Chapter, is hosting a webinar on the COVID-19 vaccine and autoimmune conditions. Presenting are Robert Spiera, M.D., Director, Scleroderma, Vasculitis, & Myositis Center at HSS, who will discuss the COVID-19 vaccine and specific concerns in patients with autoimmune disorders. Also, Juliette Kleinman, L.C.S.W., A.C.S.W., and Susan Rodriguez, L.C.S.W., social workers at HSS, will discuss gathering facts and resources about the vaccine and strategies to make an informed decision.

REGISTER

Healio Rheumatology

Fatigue & Raynaud's Top Physical Activity Barriers in Scleroderma

A February 25, 2021, article by Healio News, reports on a survey published in the journal Arthritis Care & Research regarding barriers to physical activity for individuals who have scleroderma. The survey was conducted by Sami Harb, B.Sc., of McGill University and the Sir Mortimer B. Davis Jewish General Hospital, in Montreal, Canada.

READ

 Black Health Matters logo

Black Health Matters Winter Summit

WEBINAR: Saturday, February 27, 2021
8:10 a.m.-5:30 p.m. Eastern

Join Back Health Matters for the largest public health event in the nation. See the leading physicians, nurses, scientists, and even celebrities provide information and share testimonials on living your healthiest life. Best of all, this event is free!

Topics include fitness, health equity, affordability of medicine, COVID-19 vaccine, diabetes, mental health, heart disease, kidney disease, sickle cell, genetics and you, gynecologic health, rare disease, financial health literacy, lupus, caregiving, CBD and you, clinical trials, patient advocacy, women's health, men's health.

REGISTER

Ohio Sunday Sit Down 

Sunday Sitdown

FACEBOOK LIVE: February 28, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)

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

SPIN CHAT

SPIN-CHAT: Home Activity Engagement (Part I)

WEBINAR: Wednesday, March 3, 7 p.m. Eastern Time

The SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program continues its 11-week webinar series related to coping during COVID-19, tailored to the needs of the scleroderma community. The March 3 session features Laura Bustamante presenting the first of a two-part program on home activity engagement. 

SPIN-CHAT

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

Updated February 10, 2021

The American College of Rheumatology released clinical guidance on the COVID-19 vaccines. This information is available on the ACR website and has been added to the Foundation's website.

Information and frequently asked questions regarding the COVID-19 vaccines have been addressed by the Scleroderma Foundation's Medical & Scientific Advisory Board, to be used in consultation with your rheumatologist or other health care provider.

These guidelines, along with more information and recommendations for individuals affected by scleroderma about COVID-19 are posted at scleroderma.org/covid19. Please check this page from time to time for 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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