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Scleroderma Foundation
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eLetter #865 | May 15, 2020  

Michigan 2020 Webinar May First Five Years Mayes

Scleroderma: What to Expect After the First Five Years

Watch a video recording of Maureen D. Mayes, M.D., M.P.H., University of Texas, McGovern Medical School, discussing the journey from diagnosis to living with scleroderma (systemic sclerosis) in day-to-day life, and evolving symptoms over the first five years.

Produced by the Michigan and Tri-State Chapters.

VIDEO

Lee Shapiro MD 2016 Conf Raynaud Vascular video 

Scleroderma Vascular Disease: Much More than Raynaud

Video Recording, 2016 National Patient Education Conference

Watch a presentation by Lee Shapiro, M.D., Community Care Rheumatology, Saratoga, N.Y., recorded during the 2016 National Patient Education Conference. Dr. Shapiro points out that microvascular disease is more ubiquitous in scleroderma than commonly appreciated. Pulmonary hypertension, Raynaud, and scleroderma renal crisis are all well recognized vascular complications of the disease. This talk builds a case for vascular disease as the basis of many other manifestations, including gastrointestinal disease and calcinosis, and discusses angiogenesis as another possible treatment approach.

VIDEO

Ticket to Work - WISE

Maybe You Want to Work From Home?

WEBINAR: May 27, 3 p.m. ET

Want to work from home?

A Ticket to Work service provider can help with that!

Join ChooseWork to learn how Social Security’s Ticket to Work program can support you on your path to employment.

CHOOSEWORK

stepping out walking for grandma

Virtual Stepping Out eLetter

Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise is our mission to provide support, education, and research.  In the words of CEO Robert Riggs, "As scary as it all may be, and as difficult and as sad as this is, this is not a time to step down.  This is a time to step up, to dig deep, to get creative, and engage people in new ways to keep our community strong."

Going for a walk in a crowd is not safe right now. So the Foundation got creative and pivoted to virtual fundraising events. Fundraise, take a victory lap, and post a selfie on social media with the hashtag #VirtualSteppingOut.

June Fundraising Events:

STEPPING OUT 

 Advocacy 2018 Capitol Hill Day Hannah Diane Weber

Hannah Weber and her mother, Diane, Capitol Hill Day 2018

Ask Your Member of Congress to Support Scleroderma Research

We can take advantage of this down time to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research. You don’t need to leave home to make your voice heard.

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 too. More voices send a louder message!

TOSS scleroderma self management

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee

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 updated on May 1. Please check it from time to time for additional updates.

COVID‑19

Sundar Balasubramanian

Sundar Balasubramanian, Ph.D., C.‑I.A.Y.T.

STaY Breathing!

Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of the ongoing Gentle Yoga & Yogic Breathing (GYYB) program for individuals who have scleroderma. In the current environment of COVID‑19, it is important to minimize exposure, which is especially relevant to those who have scleroderma. At the same time, keeping up with good exercise is the key to better health and symptom management. With this in mind, Sundar Balasubramanian, Ph.D., C.‑I.A.Y.T., is transforming the GYYB program into the telehealth mode so you can practice from home. Attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted.

You may choose to attend one or more webinars from the following dates, all occur at 11 a.m. Eastern Time:

  • May 16

WEBINAR

 
 
 
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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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