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eLetter #794 | December 28, 2018  

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Holiday Hours

In observance of the New Year holiday, the Scleroderma Foundation National Office will be closed Tuesday, January 1, 2019.  Calls to the Hope line, (800) 722-4673, will go to voice mail during this time.

The office is open New Year's Eve Day, December 31, from 8:30 a.m. until 5 p.m. Eastern Time.  Calls to the Hope line, (800) 722-4673, will be answered.

Happy New Year!

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.

University of Chicago Scleroderma Center


Research & Treatment Centers

University of Chicago, Scleroderma Clinic

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 Chicago, Illinois, there are several scleroderma research and treatment centers, including the University of Chicago, Scleroderma Clinic.  

Join Inspire!
 

"Scleroderma My Whole Life"

People who have scleroderma have lots of questions about the disease.  Doctors can answer a lot of them, but they can't answer all of them.  Some questions have more to do with your experience living with the disease than about the actual disease.  Support groups are great for sharing this kind of personal information, but distance can be an obstacle for some.  The online scleroderma support community at Inspire.com is 24 hours, seven days a week.  Post a topic you want to discuss, or reply to a question posted by someone else.  Unlike social media platforms like Facebook, Inspire is a secure environment where your personal identity is protected.  

Join the conversation today

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 NEWS

DETERMINE Phase Three Study in Dermatomyositis

Double-blind, randomized, placebo-controlled, efficacy and safety study

Corbus Pharmaceuticals LogoCorbus Pharmaceuticals recently announced the start of the DETERMINE study, a Phase 3 trial designed to evaluate the efficacy and safety of its investigational drug lenabasum for the treatment of dermatomyositis. Dermatomyositis (DM) is a rare and serious multisystem inflammatory autoimmune disease that characteristically affects muscle and skin and can also involve the lungs, heart, joints, and gastrointestinal tract. Scleroderma is the most common overlapping disease with myositis.

  • DETERMINE is a double-blind, placebo-controlled 1-year study designed to test efficacy and safety of lenabasum in approximately 150 adults with DM 
  • Primary efficacy outcome: Total Improvement Score (“TIS”) at Week 52 
  • Secondary efficacy outcome: Change from Baseline in the Cutaneous Dermatomyositis Activity and Severity index (“CDASI”) activity score at Week 52 
  • If the efficacy data from DETERMINE are positive and the safety profile continues to be favorable, we intend to approach regulatory authorities about a registration package for lenabasum for treatment of DM.
  • Website link for people interested in participating in the study: https://www.corbuspharma.com/clinical-trials/phase-3-study-in-dermatomyositis

Medical professionals may email Corbus at DMphysicians@corbuspharma.com for more information about study participation.

Patients, caregivers or patient advocates looking for additional information may email Corbus at DMpatients@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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