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Scleroderma Foundation
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eLetter #897 | December 23, 2020  
Holiday
New Year 2021

Happy Holidays!

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

The eLetter schedule has adjusted to the holidays, too. This eLetter, #897, is the one that would have normally arrived on Friday, 12/25, Christmas Day. The next eLetter, #898, will be delivered Saturday, January 2, rather than New Year's Day.

You can find a wealth of information and resources on www.scleroderma.org. Our YouTube channel hosts dozens of educational videos from scleroderma experts on symptom management and more. Don't forget to like us on Facebook, and follow us on Twitter and Instagram. The Foundation also has a LinkedIn page!

HAPPY HOLIDAYS!

Ohio Sunday Sit Down

Sunday Sitdown

FACEBOOK LIVE: December 27, 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, unsecured nature of Facebook, do not share private, personal information during this conversation.

WATCH

YouTube 2020 Virtual University December 19 Young Adults

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

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

Moderator: Amy Gietzen, Patient Advocate.

Panelists: Cat Davis, Patient Advocate; Alejandra Serrano, Patient Advocate; Erion Moore, Patient Advocate; Shervin Ghanoongooi, Patient Advocate; and Fatema Shahab, Patient Advocate.

WATCH

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

Advocacy Demi Senator Portman Capitol Hill Day

Ask Your Member of Congress to Support Scleroderma Research

Take advantage of this time at home to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research. Sign prepared letters asking your U.S. Representative and Senators to co-sponsor a bipartisan, budget-neutral bill that supports people living with all fibrotic diseases.

Please complete both letters, H.R. 3446 (House), S. 2477 (Senate), and email them to advocacy@scleroderma.org. You can also print the letters and complete by hand. Scan and email them to advocacy@scleroderma.org or send by U.S. mail to Scleroderma Foundation; Attn: Advocacy; 300 Rosewood Drive, Suite 105; Danvers, MA 01923.

Encourage your family, friends, colleagues, and neighbors to complete letters to send a louder message!

Scleroderma Foundation Member

Are You a Member?

As we begin 2021, please join us through a membership in the Scleroderma Foundation. For as little as $25*, you become a valued member and receive the following:

  • Scleroderma Voice, the Foundation’s quarterly magazine with updates on the latest scleroderma research and treatments, articles by leading doctors and other health professionals, practical tips about coping with symptoms, and heartwarming stories about individuals affected by scleroderma.
  • $50 off registration to our annual National Patient Education Conference.

*$35 U.S. for international members.

Become a member today, or give the gift of membership to a loved one, at www.scleroderma.org/membership.

SF Logo Standard JPG

 

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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