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eLetter #879 | August 21, 2020  

SF Virtual University Summer Series Logo

Vivian Stephens Makeup Artist Virtual University
Vivian Stephens

Skin Care and the Art of Camouflage Makeup
Virtual University Webinar:
August 26, 3 - 4 p.m. Eastern

Join us Wednesday, August 26 for "Skin Care and the Art of Camouflage Makeup," presented by Vivian Stephens as part of the Scleroderma Virtual University patient education summer series.

Come join us and listen to Vivian Stephens, a professional makeup artist from Austin,Texas, and a person living with scleroderma who believes makeup should be accessible to everyone regardless of color, orientation, gender, age, ability, shape, and size. Ms. Stephens will cover the following in her demonstration:

  • Skin prep (products that improve moisture and texture before makeup application)
  • How to camouflage hyperpigmentation and red spots
  • How to remove makeup without stripping the skin of moisture

REGISTER

YouTube 2020 Virtual University August 19 Leader

Video: Oral Health & Scleroderma

Watch the recording of the Virtual University presentation by David Leader, D.M.D., M.P.H., titled "What Do Your Dentists and Your Physicians Want You to Know About Scleroderma, Oral Health, and You?The webinar originally aired on August 19, 2020 as part of the Scleroderma Virtual University patient education summer series.  The video is posted to the Scleroderma Foundation's YouTube channel.

WATCH

Michael Bessert Dx 2013 Know the Face of Scleroderma Awarene
Michael Bessert

Know the Face of Scleroderma

During Awareness Month in June, we highlighted a number of individuals on sclerodermaaware.org who volutneered to tell their scleroderma story to help increase awareness. Each month, we will share one of their stories here to keep the momentum going.  

In August 2013, Michael Bessert was diagnosed with systemic scleroderma limited, then re-diagnosed with diffuse the following October. Almost immediately, he reached out to the Scleroderma Foundation Michigan Chapter. 

“With a scleroderma diagnosis, I was served lemons,” he said. “I’m proud that I made lemonade.”

SCLERODERMA AWARE

RARE Scholarship

RAREis Scholarship Fund

DEADLINE AUGUST 28

The EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to 32 recipients for the Spring 2021 semester.

APPLY

NORD logo stacked

NORD and FDA to Co-Host Listening Session on Rare Disease and the Pandemic

National Organization for Rare Disorders (NORD) and FDA will co-host a virtual "listening session," during which the rare disease community will have the opportunity to share their experience living with a rare disease in the pandemic, and submit questions in advance directly to FDA staff. When you register, you may submit your questions to FDA regarding their role in responding to the pandemic. You can also express your interest in being one of three patient speakers in this session.

REGISTER

Global Genes unSummit 2020

Global Genes LIVE! A RARE Patient Advocacy (un)Summit

September 15-25, 2020 Virtual Event #2020GGSummit

An interactive, two-week virtual experience with something for everyone.  Performances from rare artists like Peter Dankelson and a live yoga clas with Katie Burke, and disease expert Timonty Yu. You can also participate in pre-event activities like a social media challenge by checking out @GloalGenes on social media.  

REGISTER

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

 HAS High Risk Students

How to Navigate Going Back to College in the Age of COVID-19

Many vulnerable students are concerned about the upcoming Fall 2020 semester due to the ongoing global pandemic. The Health Advocacy Summit has compiled some resources and tips for students with chronic medical disabilities or chronic illnesses. 

REOURCES

Ticket to Work - WISE

Ticket to Work

WEBINAR: August 26

If you receive Social Security disability benefits (SSI/SSDI), you probably have lots of questions about how work will affect your benefits. Join Choose Work on August 26 as they answer some of your questions and tell you how you can get started with Social Security’s Ticket to Work Program! 

REGISTER

stepping out two women walking

Virtual Stepping Out eLetter

Keeping Our Promise

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.

August & September Virtual Fundraising Events:

STEPPING OUT

Benjamin Korman, M.D., University of Rochester

Your Generosity is Critical to the Foundation's Ability to Meet its Mission

Research is an important part of our mission that supporters, like you, make possible. Your generosity funded eight new research projects in 2020. Importantly, four of those grants were awarded to scientists who are early career investigators in scleroderma research.

Among them is Benjamin Korman, M.D., of the University of Rochester. His three-year project has the potential to better understand pulmonary hypertension in systemic sclerosis and to reveal a possible new treatment avenue.

Please give as generously as you can.

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

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

boehringer more than scleroderma kheesa

More than Scleroderma

A series of six scleroderma education webinar programs are being hosted nationally in August and September by one of the Scleroderma Foundation's partners, Boehringer Ingelheim. These programs are free and open to individuals affected by scleroderma and their family and friends. The Foundation is not managing registration and is not responsible for the content. When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

Webinar Dates (all times Eastern):

  • >Thursday, August 27, 4 p.m.
  • Monday, September 14, 6 p.m.
  • Wednesday, September 16, 7 p.m.
  • Wednesday, September 23, 3 p.m.

CLICK HERE to register or CALL (855) 415-7492

Clinical Trial Opportunity

SLS III Scleroderma Lung Study III

ENROLLMENT CLOSING October 1, 2020

SLS III is a multicenter clinical trial designed to compare two different experimental treatments for patients with Scleroderma who have lung involvement by interstitial lung disease (also known as pulmonary fibrosis). All participating patients will receive study drugs, provided at no charge to them or their insurance, for the duration of their participation in this 18-month study.

The SLS III study is being carried out at 17 different clinical research centers throughout United States and enrolling new participants through October 1, 2020.

To be eligible to participate in SLS III, patients must meet the following criteria:

  • Be at least 18 years old
  • Have systemic scleroderma which can be either the limited type (previously called CREST syndrome) or the diffuse type
  • Need to be within 7 years from their first symptoms (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening
  • Have shortness of breath
  • Have evidence of lung involvement that suggests the presence of interstitial lung disease (pulmonary fibrosis)
  • Meet other eligibility criteria that a study doctor will explain to you as part of the evaluation process.

You can view more information about Scleroderma Lung Study III and obtain contact information from either our official SLS III website at the following link: Sclerodermalungstudy.org; or the ClinicalTrials.gov website by using this link: Scleroderma Lung Study III on ClinicalTrials.gov.

Food Choices and Sclerodeerma

Many people living with scleroderma perceive that what they eat influences their symptoms related to scleroderma. This study is inspired by people attending the Scleroderma Foundation Patient Conference who expressed a desire for research such as this to be conducted.

If you are a person with scleroderma and you experience related gastrointestinal symptoms such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation etc., you may be interested in participating in this research study.

This is a national study run by the New Orleans Scleroderma Patient Care and Research Center (Lesley Ann Saketkoo, MD, MPH, Tulane University Lung Center) using telephone counseling and online questionnaires to assess the impact of various diets that might impact symptoms in scleroderma.

If you are interested in participating: email CTDresearch@tulane.edu with your name and telephone number. Dr. Saketkoo or Ms. Jensen will call and/or email you.

Belimumab and Rituximab Combination Therapy

Overview

  • This is a randomized, placebo-controlled trial, where patients will be randomized in a 2-to-1 fashion to treatment with rituximab 1000 mg every other week for two infusions followed by weekly belimumab (200 mg subcutaneously) or placebo infusions followed by weekly subcutaneous placebo injections
  • All patients will receive background mycophenolate mofetil
  • Study duration: 15 months

Inclusion Criteria

  • Age: 18-80 years
  • Classification of systemic sclerosis (SSc), as defined using the 2013 American College of Rheumatology/European Union League Against Rheumatism classification of SSc
  • Diffuse skin involvement
  • Disease duration of less than or equal to 3 years as defined by the date of onset of the first non-Raynaud’s symptom
  • A modified Rodnan Skin Score (mRSS) of > 14

HSS Hospital for Special Surgery logoExclusion Criteria

  • Prior use of B-cell depleting therapies
  • FVC < 45%
  • DLCO < 30%

CONTACT

Hospital for Special Surgery:

Liza Morales, Research Coordinator
(212) 774-2561, moralesli@hss.edu

Beemnet Amdemicael, Research Assistant
(212) 774-2048, amdemicaelb@hss.edu

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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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