Forgot password?
   Please leave this field empty
Home | About Us | Careers | Contact Us | Shop | Connect:
Support Education Research
Please leave this field empty
Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
eletter banner.jpg
eLetter #869 | June 12, 2020  

National Day of Action logo

Speak Up for Scleroderma, Monday, June 29

Register now for our National Day of Action and join thousands of others across the country to ask members of Congress to support bills important to the scleroderma community. Join a 45-minute training webinar on June 22 (or watch it later), and you'll be ready. There’s no cost to participate. The bills important to the scleroderma community are budget neutral and have both Republican and Democrat support. As one advocate has said, "adding your voice to this effort isn’t political, it’s personal." Register today and share the link with your friends and family.

REGISTER - LEARN MORE

Demeshia Demi Montgomery Awareness Month 2020

Demeshia Montgomery, Dx 2008

Know the Face of Scleroderma

Demeshia Montgomery, Diagnosed 2001

During June, to celebrate Scleroderma Awareness Month, the eLetter will feature individuals whose lives were changed by scleroderma.

Demeshia Montgomery has had scleroderma for half her life. She's 38 years old. "Demi," as she's called, first realized something was wrong after giving birth to twins 27 weeks premature. The loss of her twins and the scleroderma diagnosis are painful realities Demi deals with every day. Yet, she lives with a positive perspective and takes action as a scleroderma advocacy volunteer.

"I tell you this story to share how a disease so horrible can be a gift at the same time."

READ MORE - SOCIAL MEDIA TOOLKIT

clinical rheumatology journal cover 

Crossroads in Care for SSc During COVID-19

Clinical Rheumatology, an international, peer-reviewed journal in the general field of rheumatology, publish an article reviewing the challenges of treating individuals who have systemic sclerosis during the era of COVID-19.  

The article addresses the complex issues of immunospression, differential diagnosis, and long-term psychological distress that confront physicians.

READ

 Iowa Proclamation 2020 Awareness

Proclamation!

In recognition of World Scleroderma Day on June 29, a number of Scleroderma Foundation chapters have secured proclamations and resolutions from their state legislature or executive branch. Credit goes to the volunteers and staff who made this happen. Proclamations and resolutions not only help to acknowledge our cause, but they enter scleroderma into the official history of those states. In light of the pubic health crisis caused by COVID-19, this effort was particularly impressive as many state offices shut down.

Credit goes to the Heartland Chapter (which received proclamations from Iowa, Nebraska, and South Dakota), the Michigan Chapter, the Ohio Chapter, the Rocky Mountain Chapter (Colorado), and the Texas Bluebonnet Chapter.

ADVOCACY

ATS Managing the Intensive Care Unit ICU Experience

Managing the ICU Experience

ATS has an important new critical care resource entitled “Managing the ICU Experience” for patients and families. This guide is an update of a prior version first developed in 2001 by Drs. Manthous and Tobin, and has been updated with input from critical care luminaries including Drs. Carson, Curtis, Ely, Kollef, Kreiss, Provonost, Schweikert, and Stapleton. This new effort was led by the ATS Patient and Family Education Committee with substantial input from the ATS Ethics and Conflict of Interest Committee. The guide can be used by institutions, healthcare professionals and laypersons to provide information, facilitate dialog, and offer support those dealing with the ICU experience. See link below.

https://www.thoracic.org/patients/resources/managing-the-icu-experience.pdf

This guide is complementary to the full range of COVID-19 and critical care related patient education materials designed for patients, families and caregivers at: https://www.thoracic.org/patients/patient-resources/covid-19.php. Many materials are available in Spanish or other languages.

Virtual Stepping Out eLetter

Vermont Stepping Out Hills Path

stepping out two women walking

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 

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

Clinical Trial Update

Theraly Fibrosis Granted US Orphan Drug Designation for TLY012 for Systemic Sclerosis 2020-05-2

TLY012 is shown to reverse skin fibrosis in preclinical models of scleroderma

In a May 27 press release, Theraly Fibrosis, a preclinical-stage biotechnology company focused on development and commercialization of drugs for various fibrotic diseases, announced that the US Food and Drug Administration (FDA) granted Orphan Drug Designation (ODD) to TLY012 for the treatment of systemic sclerosis. The FDA grants ODD status to medicines intended for the treatment, diagnosis or prevention of rare diseases or disorders that affect fewer than 200,000 people in the US. In 2019, the FDA granted ODD to TLY012 for the treatment of chronic pancreatitis.

PRESS RELEASE

 Advertisement
Kadmon Trial 2020 kadmonscleroderma.com
 
 
 
QUICK LINKS
 
Advocacy
Contact Us
Become a Member
About Scleroderma
Calendar of Events
Online Chat
Store
Make a Gift
Home
 
SOCIAL MEDIA
 
Facebook
Twitter
Instagram
YouTube
 
 
SPONSORS
 
Diamond National Sponsors

Actelion Plain

Boehringer Ingelheim Plain

 

Corporate National Sponsors

United Therapeutics Logo

Corbus Pharmaceuticals Logo

 

 

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.

Powered by Blackbaud  Unsubscribe | Visit our web site | Contact Us | Donate
300 Rosewood Drive, Suite 105, Danvers, MA 01923 tel: 800-722-HOPE (4673)
© 2020 All rights reserved.