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Scleroderma Foundation
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eLetter #874 | July 17, 2020  

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Francesco Boin, M.D.

Virtual University
Patient Education Summer Series

WEBINAR: July 22, 3 - 4 p.m. Eastern Time
Health Disparities and Outcomes in Scleroderma African American Patients: Nature Versus Nurture
Francesco Boin, M.D., Chief of the Division of Rheumatology, Kao Autoimmunity Institute, Cedar Sinai Medical Center

The Scleroderma Foundation's "Virtual University" Patient Education Summer Series continues with a look at the African American experience with scleroderma. Differences exist in the susceptibility and severity of scleroderma across different ethnic groups. In African Americans, scleroderma develops at a younger age, with more severe manifestations and greater mortality compared to Caucasians. While socioeconomic factors such as inadequate access to health care may play a role, genetic or biological differences may also be involved in determining the poor health outcomes observed in African Americans. New genetic studies combined to updated epidemiological data may help understanding the root of the problem and delivering more effective clinical care.

REGISTER

 SF University Webinar July 15 Farrell Medications YouTube

Virtual University Webinar Recording

VIDEO: Scleroderma Medications: What Works? How Can I Get It? Jessica Farrell, Pharm.D., Albany College of Pharmacy and Health Services

Watch a video recording of the July 15 webinar from the Scleroderma Foundation's "Virtual University" Patient Education Summer Series.

WATCH

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"Investigational New Drug" Status Approved for Novel Cell Therapy

Talaris Therapeutics, Inc., announced that the U.S. Food and Drug Administration (FDA) approved the company’s Investigational New Drug (IND) application for the evaluation of its novel cell therapy FCR001 in the treatment of diffuse systemic sclerosis (SSc). Approval of this IND allows Talaris to initiate a Phase 1/2a trial at sites across the United States, including Duke University and the University of Michigan.

PRESS RELEASE

 Michigan Parents Online Group August 2020

Helping Your Child Adjust to a New School Year

Parents of Children with Scleroderma, Online Support Group: August 5, 7:30 p.m. to 9:00 p.m. Eastern

Heading back to school can be both exciting and nerve-wracking. If you and your child have the right tools, it can be a more seamless experience. Join an online support group on August 5 from 7:30 p.m. to 9:00 p.m. to learn tips and tricks for this back-to-school season. 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

 2020 Scleroderma Canada Virtual Conference October

Scleroderma Canada Virtual Conference

Our northern neighbors, Scleroderma Canada, restructured their biannual gathering into a virtual conference taking place October 5 - 9, 2020. Gain insight from researchers, physicians, and professional caregivers in 15 sessions, including 3 keynote speakers for $35 (Canadian). Early bird pricing runs until September 15th.

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 Virtual Stepping Out eLetter

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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. And remember, donations are accepted for at least 30 days after the event and longer in many cases.

July & August Virtual Fundraising Events:

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

 Ticket to Work - WISE

Ticket to Work

In recognition of the 30th anniversary of the signing of the Americans with Disabilities Act, the Social Security Administration's Ticket to Work program is sharing resources for reasonable accommodations in the workplace.

Did you know that a service provider through Social Security’s Ticket to Work Program may be able to help you with reasonable accommodations for work? Join ChooseWork and the Northeast ADA Center on July 22 for the next WISE webinar to learn about how a Ticket to Work service provider can help you with job accommodations.

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myPHteam

Have UN-Facebooked, unfiltered conversations, about the best ways to manage and live with pulmonary hypertension on myPHteam-->

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Clinical Trial Opportunity

Cumberland Pharmaceuticals ifetroban trial

Aiming to Prevent Cardiomyopathy

If you are an adult with systemic sclerosis, you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug, called ifetroban, to determine if symptoms improve. Eligible subjects will be reimbursed for their time and travel. Trial Locations:

  • Baltimore, Maryland
  • Boston, Massachusetts
  • Charleston, South Carolina
  • Dallas, Texas
  • Los Angeles, California
  • New York, New York
  • Seattle, Washington

To learn more about ifetroban for systemic sclerosis (SSc), please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

 

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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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