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Scleroderma Foundation
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eLetter #866 | May 22, 2020  

Hospital Visit Checklist Prepared

A Guide to Navigating the Hospital Admission Process: Know Before You Go

Linda J. Bornstein Baum, O.D., a member of the Foundation's national board of directors, prepared a detailed guide of the typical hospital admission process to help you be more comfortable and prepared if you have a reason to seek treatment through the emergency department or regular in-patient care. 

The guide includes details regarding identification, medications, insurance, valuables, advance directives, health care proxies, and more.  

GUIDE

Spotting Bad Science

Spotting Bad Science

Posted on CompoundChem.com, this chart outlines 12 factors to help the lay person recognize "bad science." The website states, "The vast majority of people will get their science news from online news site articles, and rarely delve into the research that the article is based on. ...it’s therefore important that people are capable of spotting bad scientific methods, or realising when articles are being economical with the conclusions drawn from research, and that’s what this graphic aims to do. Note that this is not a comprehensive overview, nor is it implied that the presence of one of the points noted automatically means that the research should be disregarded. This is merely intended to provide a rough guide to things to be alert to when either reading science articles or evaluating research.

GUIDE

Ticket to Work - WISE

Maybe You Want to Work From Home?

WEBINAR: May 27, 3 p.m. ET

Do you 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

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 

 Advocacy Capitol Hill 2018 Gietzen

Amy Gietzen, 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!

needymeds logo.jpg

Authorized Generics: Brand Quality Medicines at a Generic Price

WEBINAR: May 28, 1:30 - 2:30 p.m. Eastern

Price-sensitive individuals looking for brand quality prescription medicines should know they could have the option to choose authorized generics. Authorized generics are made by the manufacturer of the brand name product but do not include the brand name on their labels. For individuals who are sensitive to changes in inactive ingredients or even shape or size of their medicines, asking for an authorized generic version of their medication at the pharmacy might be ideal, especially since you generally do not pay more for them than traditional generics.

WEBINAR

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 Opportunities

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at ClinicalTrials.gov. This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.

CLINICAL TRIALS

 
 
 
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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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