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Scleroderma Foundation
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eLetter #893 | November 27, 2020  

emotional help

University of Michigan Ginsberg Center

What are the Barriers that Confront You in Accessing Mental Health Care?

The Scleroderma Foundation is conducting a survey to help answer the following questions:

  • What are barriers that people with scleroderma face in accessing mental health services?
  • What mental-health related services are wanted that the Scleroderma Foundation can provide?

Your responses will be used to help guide the Scleroderma Foundation in creating mental health resources, programs, and services for those persons living with scleroderma in the United States. We ask that only persons living with scleroderma complete this survey and only do so once so we can obtain accurate data.

The survey should only take seven minutes, and your responses are completely anonymous. Unless you choose to enter your name and email address, only your responses, the date, and time will be collected. The survey will close on December 31st, 2020. Questions marked with an asterisk (*) are required. Only individuals over the age of 18 can take this survey. If you have any questions about the survey, please contact Laura Dyas: LDyas@scleroderma.org.

SURVEY

Trophy Star

Reach for the Cure The Bittmanns

Recognition for Outstanding Service

Every year at the National Patient Education Conference, the Scleroderma Foundation takes time to recognize individuals and chapters for their outstanding service during the preceding year. Unfortunately, the pandemic removed the opportunity thank people in person, and so we present to you here the 2020 National Awards.

Philanthropists of the Year
The 2020 Philanthropists of the Year award is proudly presented to Karen and Bruce Bittmann in recognition of their outstanding efforts to advance the mission of the Scleroderma Foundation through philanthropy.

“Scleroderma affected my life, my sister’s life, and my father’s, who raised us as a single parent after my mother passed away,” said Bruce, who was five years old at the time his mother died from scleroderma. His sister was nine.

“Funding attracts the researchers; it’s only natural.” Karen added, “As we get older and feel more vulnerable, we want to know more about our medical backgrounds. We’re motivated to leave a better, healthier world for our kids and grandkids. A cure to scleroderma would do that. Research is the key.”

In addition to their major gifts, the couple has participated in Stepping Out to Cure Scleroderma walks in Denver for several years accompanied by their rescue dog, Sarah Zona.

AWARDS

Michigan Parents Online Group November 2020

Parents of Children with Scleroderma

Online Support Group: December 2, 2020, 7:30 - 9 p.m. Eastern

Do your family members, friends or even strangers offer advice about your child’s scleroderma? Are you unsure how to respond to these remarks? Join us for an online support group on December 2 from 7:30-9:00 p.m. to learn tips and tools to better navigate these comments. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

ZOOM

Giving Tuesday 2020 Save the Date

Giving Tuesday is December 1

Join the many others who participate in Giving Tuesday.

When you give to the Scleroderma Foundation, you are providing life changing support, education, and research. 

On Tuesday, the 1st of December, please give generously.

GIVING TUESDAY

Advocacy Cowan Tri-State

Advocacy Capitol Hill 2018 Group

Ask Your Member of Congress to Support Scleroderma Research

You don't need to leave home to make your voice heard! 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).

Complete the letters online 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!

Ohio Sunday Sit Down

Sunday Sitdown

Facebook Live: Sunday, November 29, 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 that given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

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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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