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Scleroderma Foundation
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eLetter #886 | October 9, 2020  

Scleroderma Virtual University Fall Series

Amy Gietzen fall 2020
Amy Gietzen, Patient Adocate (Dx 2001)

Connecting as a Young Adult with Scleroderma
WEBINAR, Scleroderma Virtual University
October 14, 3 - 4:30 p.m. Eastern (90 Minute Session)
(2 Central, 1 Mountain, 12 Pacific)

Moderator: Amy Gietzen, Patient Advocate (Dx 2001)
Panelists: Cat Davis, Alejandra Serrano, Shervin Ghanoongooi, Fatema Shahab

The Scleroderma Virtual University fall patient education series continues with an important panel discussion among young adults who have scleroderma. Join us as patient advocates share their personal experiences with relationships, both intimate and platonic. Listen in on an active discussion related to friendships, family, and dating when you’re a young adult living with scleroderma.

REGISTER

Lesley Ann Saketkoo MD MPH sq

VIDEO: Learning to Love Our Friend—The Gut

Watch the video recording of "Learning to Love Our Friend—The Gut," originally presented October 7 by Lesley Ann Saketkoo, M.D., M.P.H., of Tulane University School of Medicine. (Part of the Scleroderma Virtual University patient education fall series.)

WATCH

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Social Media

Facebook, Twitter, Instagram, YouTube, LinkedIn...the Foundation has a handle on each one.  Like us, follow us, comment, and emoji!  Social media engagement is important to the Foundation because every interaction is an opportunity to increase awareness of scleroderma and the Foundation among your networks.

Telehealth ILD Patient Checklist

Preparing for a Successful Telehealth Experience

There are several things you and your caregiver can do to prepare for your telehealth appointment. This checklist will help you both make the most of your time with your doctor. Please review the following before you get on the phone or have a video call with your doctor. Below is a guide of things you may find helpful. Please be sure to ask your doctor if there are any specific requirements for your upcoming telehealth visits, such as vital signs to record and the telehealth platform they use.

DOWNLOAD

 PEDRA Annual Conference 2020

PeDRA Annual Conference

2020 Virtual Event, October 22-23

Due to uncertainty of the ongoing COVID-19 pandemic and commitment to the health, safety, and comfort of all attendees, PeDRA leadership has made decision to conduct the 2020 Annual Conference virtually. Join us October 22-23 from the comfort of your home or office for the first-ever virtual PeDRA Annual Conference. Conference organizers remain committed to hosting an event to learn, share, and advance research that improves the lives of children and families facing the burden of pediatric skin diseases. The virtual format will not stop them.

REGISTER

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Vermont Stepping Out Hills Path

Virtual Stepping Out eLetter

Keeping Our Promise While Staying Safe

You can help the Scleroderma Foundation keep the promise it made to everyone affected by scleroderma to provide the best emotional support, educational programs, and peer-reviewed research.

We can't miss a step because everyone is counting on us, but we need your help. Stay safe at home and fundraise virtually with effective online fundraising tools. Sign up today for a virtual fundraising event.

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

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This Year, Ask for Money on Your Birthday ;-)

Don't be shy! Instead of presents for yourself, celebrate your birthday by asking family and friends to give a gift to the Scleroderma Foundation with a Facebook Birthday Fundraiser.

100 percent of monies donated via Facebook fundraisers are passed on to the Scleroderma Foundation.  There are no fees. Every dollar goes to the Foundation's mission to provide support, education, and research.

Okay, you can ask for new socks, too. You deserve a little pampering.

FACEBOOK FUNDRAISING

Study Update

Genomic Risk Score Impact on Susceptibility to Systemic Sclerosis

Genomic Risk Score Impact on Susceptibility to System ScleroObjectives Genomic Risk Scores (GRS) successfully demonstrated the ability of genetics to identify those individuals at high risk for complex traits including immune-mediated inflammatory diseases (IMIDs). We aimed to test the performance of GRS in the prediction of risk for systemic sclerosis (SSc) for the first time. 

Conclusions GRS was successfully implemented in SSc. The model discriminated between patients with SSc and controls or other IMIDs, confirming the potential of GRS to support early and differential diagnosis for SSc.

READ FULL ARTICLE

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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