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eLetter #793 | December 21, 2018  

Holiday

 

Holiday Hours

In observance of the Christmas holiday, the Scleroderma Foundation National Office will close on Monday, December 24 at 2 p.m. Eastern Time and will be closed the full day on December 25.  Calls to the Hope line, (800) 722-4673, will go to voice mail during this time.

RFTC Carol Feghali-Bostwick sq


Potential Therapeutic Target for Lung Fibrosis Identified

MedicalXpress.com (12/20/18) reports on an article published by Carol Feghali-Bostwick, Ph.D., and a team of researchers at the Medical University of South Carolina (MUSC) in Frontiers in Endocrinology (10/15/18) regarding a potential therapeutic target for lung fibrosis. Feghali-Bostwick says, "Targeting [the protein] would allow us to possibly reduce the effect of all of the others that are downstream of it."

Carol Feghali-Bostwick is Vice Chair of the Scleroderma Foundation board of directors. She is the Kitty Trask Holt Endowed Chair for Scleroderma Research at MUSC and is senior author on the article.

read the MedicalXpress report

read the Frontiers in Endocrinology article

EOY 2018 Instagram Dani Steinwandt IV


Investing in Dreams

Looking back on this past year, we find so many reasons to say ‘thank you’ for your unwavering support and generosity. You invested in the dreams of individuals affected by scleroderma, like Dani Steinwandt and her mother, Karen, whose stories of strength, courage and determination inspire us and bring us together.

Please give today to the Scleroderma Foundation. As we look forward to 2019, we know that together, we can create better tomorrows for those living with scleroderma.

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis (TOSS)

An Internet Self-Management Program

Often, individuals with scleroderma do not know other people with the disease.  They might live in a state where there is no chapter of the Scleroderma Foundation, or in a community where there are no support groups available. This web-based self-management program was designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies that help you advocate for yourself.  Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life.

Register today to gain skills and confidence to manage systemic sclerosis symptoms and to learn strategies to advocate for yourself.  Peer Mentors from the program will empower you to take control of your life and your healthcare.

register today

smarter travel disabled image


Disabled Travel

Tips and Advice for Travelers with Disabilities

SmarterTravel.com offers helpful information about travel for people with disabilities.  The tips and advice provide a guide to keep you on moving through the world despite mobility impairments or other limitations that might seem at first to keep you grounded.  

sign in with your email and explore

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Research & Treatment Centers

Yale School of Medicine, New Haven, Connecticut

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Connecticut, Yale University's Yale School of Medicine offers several clinical resources for treating scleroderma, including the department of internal medicine.  

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Pulmonary Rehabilitation

Did you see ATS’s recent survey revealing that 62 percent of patients with chronic pulmonary disorders like COPD have never heard of pulmonary rehabilitation, a proven treatment for their deadly diseases?

learn more

myPHteam sometimes
 

myPHteam

When you have pulmonary hypertension you don't always know how you're going to feel from one day to the next.

Do you ever feel guilty for canceling plans so you can rest?

Share in the discussion at myPHteam

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

CLINICAL TRIAL PARTICIPATION

Corbus Pharmaceuticals LogoThe RESOLVE-1 Study

Trial to Evaluate Efficacy and Safety of Lenabasum in
Diffuse Cutaneous Systemic Sclerosis

Corbus Pharmaceuticals is conducting a Phase 3 research study that is currently enrolling patients to determine if the investigational drug lenabasum is safe and effective for the possible treatment of diffuse cutaneous systemic sclerosis (scleroderma). This is a global, double-blind study that is expected to enroll about 350 subjects at approximately 60 sites across North America, Europe, Asia and Australia. Participants will be randomized to receive 5 mg lenabasum, 20 mg lenabasum or placebo for a 12-month study treatment period.

To participate, the following minimum criteria must be met:

  • Be at least 18 years old at the time informed consent is signed
  • Have diffuse cutaneous SSc (skin thickening on upper arms, upper legs, or trunk)
  • Disease duration less than or equal to 6 years from the first non-Raynaud's symptom.
  • No new or increased doses of immunosuppressive medications within 8 weeks prior to Screening

Please note that there are additional criteria that must be met in order to participate in this study.

Learn more about the RESOLVE-1 study and participating centers on clinicaltrials.gov  (reference identifier: NCT03398837). If you have any questions, please feel free to contact Lindsey Smith at SScpatients@corbuspharma.com.

 

 
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Actelion JSN 2018

 

Boehringer Ingelheim 2018 Platinum National Sponsor

 

Bayer 2018

 

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

 

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Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 


 

   

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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