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eLetter #882 | September 11, 2020  

Scleroderma Virtual University Fall Series

Mihaela Teodorescu, M.D., M.S. square
Mihaela Tod, M.D.

The Importance of Sleep When Living With Chronic Lung Disease
Virtual University Webinar: Sept. 16, 3 - 4 p.m. Eastern
(2 Central, 1 Mountain, 12 Pacific)

With Mihaela Teodorescu, M.D., M.S., University of Wisconsin School of Medicine and Public Health

Learning objectives for this webinar are:

  1. Understand the normal respiratory physiology during sleep.

  2. Discuss how chronic pulmonary interstitial and vascular disease impact sleep.

  3. Understand how sleep disturbance/sleep apnea impact chronic lung disease outcomes.

REGISTER

YouTube 2020 Virtual University September 9 Mendoza Spanish

VÍDEO: Manifestaciones Gastrointestinales de la Esclerodermia

Vea la grabación de video del seminario web del 9 de septiembre, "Manifestaciones gastrointestinales de la esclerodermia", con Fabián Mendoza-Ballesteros, M.D. Esta charla se centra en los síntomas gastrointestinales comúnmente asociados con la esclerodermia sistémica.

Presentado originalmente como parte de la Scleroderma Virtual Univeristy, serie de otoño sobre educación del paciente. (Presented exclusively in Spanish.)

VEA

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Results of RESOLVE-1 Phase 3 Study of Lenabasum Miss Targeted Endpoint

In a press release dated September 8, 2020, Corbus Pharmaceuticals announced topline results of its Phase 3 RESOLVE-1 study pf lenabasum for systemic sclerosis. The results were surprising to the company because prior trials suggested the potential for an effective treatment. Corbus will conduct a deeper analyses of the data, and expects to engage the FDA to determine potential next steps in this clinical development program. Corbus will present the data at upcoming medical conferences. Read the company’s full press release.

READ

PFF Awareness 2020 30 facts 30 days two

Pulmonary Fibrosis: 30 Facts in 30 Days

During September, in observance of Pulmonary Fibrosis Awareness Month, the Pulmonary Fibrosis Foundation is sharing 30 facts in 30 days on their social media channels.

30 FACTS

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 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 class 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

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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

 2020 Scleroderma Canada Virtual Conference October

Scleroderma Canada Virtual Conference

Our northern neighbors, Scleroderma Canada, converted their annual conference to a virtual platform, which takes place October 5 through 9, 2020.  Gain insights from researchers, physicians, and professional caregivers during 15 sessions, including 3 keynote speakers. The cost is $35 (Canadian).  

Early bird pricing runs until September 15. 

REGISTER

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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):

  • 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

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Celebrate Your Birthday!

Celebrate your birthday by raising money on Facebook to advance the Scleroderma Foundation's mission to provide support, education, and research.

100 percent of monies donated via Facebook fundraisers are passed on to the Scleroderma Foundation.  There are no fees.

Birthday fudraisers are the most common, but you can create a Facebook fundraiser to benefit the Foundation for any reason you choose.  

FACEBOOK FUNDRAISING

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.

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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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