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eLetter #880 | August 28, 2020  

Scleroderma Virtual University Fall Series

Daniel Furst MD UCLA small square
Daniel Furst, M.D.

Pain: Its Causes and Its Treatments
Virtual University Webinar:
September 2, 3 - 4 p.m. Eastern
(2 Central, 1 Mountain, 12 Pacific)

Scleroderma Virtual University transitions to the Patient Education Fall Series starting with the first webinar in September. Join us Wednesday, September 2 for "Pain: Its Causes and Its Treatments" with Daniel Furst, M.D., University of California, Los Angeles.

Find out where the pain of scleroderma comes from and what you can do about it. In this session the sources of pain and different strategies for managing pain depending on cause will be discussed.

REGISTER

YouTube 2020 Virtual University August 28 Stephens
Vivian Stephens

Skin Care and the Art of Camouflage Makeup

Watch the recording of the Scleroderma Virtual University presentation by professional makeup artist Vivian Stephens, titled "Skin Care and the Art of Camouflage Makeup.The webinar originally aired August 26, 2020 as part of the Scleroderma Virtual University patient education summer series.  The video is posted to the Scleroderma Foundation's YouTube channel.

WATCH

Ohio Sunday Sit Down
Lucille Miller

Sunday Sitdown

Facebook Live: August 30, 1 p.m. Eastern

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

Advocacy Booth 2019 Conference

2018 Capitol Hill Day Todd Gilligan 2

When Was the Last Time You Talked To Your Member of Congress?

You don't need to leave home to make your voice heard! Take advantage of this time at home to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research.

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 to send a louder message!

US FDA Logo

US FDA Public Meeting on Patient-Focused Drug Development for Systemic Sclerosis

October 13, 2020; 10 a.m. to 2:30 p.m. Eastern

The U.S. F.D.A. is hosting a virtual public meeting on Patient-Focused Drug Development for Systemic Sclerosis. The FDA is interested in hearing patients’ perspectives on the impact of systemic sclerosis on daily life and patient views on treatment approaches.

FDA Virtual Public Meeting

2020 Pulmonary Fibrosis Awareness Month PFF

September is Pulmonary Fibrosis Awareness Month

The Pulmonary Fibrosis Foundation (PFF) has designated September as Pulmonary Fibrosis Awareness Month. During this global month-long awareness campaign, PFF provides resources to help you educate others about this rare disease, such as a planning toolkit and social media tools. Find PFF on FacebookTwitter, and Instagram. Use hashtags #PFMonth and #BlueUp4PF.

PFF

Chronic Pain Speedometer Creakyjoints

27 Things You Understand Only If you Live with Chronic Pain

Our friends at Creakjoints.org have published an article by Charlotte Hilton Andersen regarding chronic pain.  In addition to enumerating the challenges of chronic pain that people who are pain free don't recognize, the article provides references to other pain resources.

READ

walk couple dog masks trees

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

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):

  • 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.

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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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