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eLetter #791 | December 7, 2018  

YouTube 2018 Abbott Sleep and Chronic Disease


Video:  "Sleep & Chronic Disease"

At the 2018 National Patient Education Conference, we filmed a presentation by Sabra M. Abbott, M.D., Ph.D., Northwestern University, discussing the basics of normal sleep and why sleep is important for your health.  She also touched on common sleep disorders with a focus on aspects of these disorders that are unique to patients with scleroderma.  Finally, she discussed strategies that everyone can use to improve their sleep quality.

watch this video & others from the 2018 conference

ACA Open Enrollment

December 15 Deadline for 2019 Health Insurance Open Enrollment

If you need health insurance for 2019 via the individual marketplace of the Affordable Care Act, the open enrollment period ends December 15. Anyone who doesn't have coverage through a job, Medicare, Medicaid, the Children's Health Insurance Plan (CHIP), or other qualifying coverage is eligible to apply.

Visit to learn more and sign up

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NORD Webinar: "How to Make Your Insurance Work for You."

Thursday, December 20, 2 p.m. ET

Once you are signed up for your 2019 insurance plan, learn how to navigate it!

Join a webinar on how to make your insurance work for you. It will cover how insurance works, information on understanding the approval process, and tips on how to successfully reverse a denial.

This webinar is perfect for patients, caregivers, and the public

register now

Froedtert & Medical College of Wisconsin logo

Research & Treatment Centers

Medical College of Wisconsin/Froedtert Hospital, Rheumatology 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 Wisconsin, go to the Medical College of Wisconsin/Froedtert Hospital, Rheumatology Clinic.

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Patients as Partners Survey

If you have systemic scleroderma,
we need your input

The Scleroderma Foundation is working closely with a global pharmaceutical company that is currently developing a treatment for scleroderma. They are seeking the patient community’s feedback through this survey. When developing clinical trials for potential new treatments, pharmaceutical companies need and value input from patients. Your participation in this survey is critical to the development of potential new therapies for scleroderma and related conditions. Thank you for playing an active role in this process, your voice can help lead to promising future results.

Please take the Systemic Scleroderma survey before the December 14 deadline.

Join Inspire!

"Hi friends.  I haven't been on here in a while.  Some updates..."

This headline is a perfect example of the kind of connection that people who have scleroderma can form on  Pick up where you left off and share the issues you've been dealing with for the last few days or weeks or months.  Your friends are there to hear you.  They probably have their own story to share and need you to listen, too. 

That's the sort of supportive online community you can join at  Join the conversation today.

share your story of scleroderma on Inspire

EOY 2018 Instagram Dani Steinwandt II

"A Typical Teenager"

Dani Steinwandt is a typical teenager.  Her world revolves around family, friends, homework, and social media.  Like many 16-year-olds, she has big dreams after high school, like performing on Broadway and winning a Tony.  Five years ago, her dreams looked very different.  Dani was working towards her blue belt in Tae Kwon Do and playing soccer until she was diagnosed with linear scleroderma.

Please give today to the Scleroderma Foundation. Together, we can create better tomorrows for those living with scleroderma.

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) 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.

or call (800) 722-4673.

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Actelion JSN 2018

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United Therapeutics 2018 Bronze Conference Sponsor

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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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