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eLetter #785 | October 19, 2018  

YouTube 2018 Shapiro New Treatments

 

"How Are New Treatments Discovered?"

At the 2018 National Patient Education Conference Lee Shapiro, M.D., The Center for Rheumatology, gave a presentation the process behind developing ideas for treatments, testing them, and putting them to use.  Dr. Shapiro reviewed the history of discovery of the most helpful agents used today to treat scleroderma, gave attendees a point of view on the future to how new ideas are likely to arise.

watch this video & others from the 2018 conference

2018 Chapter Awareness Michigan

[L-R] Chairman Cos Mallozzi, Michigan Executive Director Laura Dyas, and Michigan Board Member Pamela Pour.


Outstanding Chapter Awareness Award

The 2018 Outstanding Chapter Awareness Award went to the Michigan Chapter, which does an extraordinary job raising awareness to educate patients, caregivers, and healthcare providers about scleroderma. In 2017, the chapter launched a new initiative at three different medical school campuses across the state. The objective was to educate medical students about specific signs and symptoms by introducing them to individuals who have scleroderma. With more than a dozen education events on the calendar each year, and a walk that brings more than 1,000 people to the Detroit Zoo for an extraordinary day of awareness and fundraising, the Michigan Chapter earned the Outstanding Chapter Awareness Award!

Michigan Chapter

Jefferson Health logo


Research & Treatment Centers

The Scleroderma Center of Thomas Jefferson University

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 the Philadelphia area go to The Scleroderma Center of Thomas Jefferson University.

ATS PAR 2018 Patient Voices 7 Misty RushingMisty Rushing
 

Patient Voices 7: Misty Rushing

ATS Patient Voices is published by the American Thoracic Society Public Advisory Roundtable (ATS PAR). During the 2018 ATS International Conference some of the best minds in pulmonary, critical care, and sleep medicine listened to 15 well-informed and engaging patients who stood at the podium and courageously shared their disease-related experiences. Their goal was to share their journey — to put a “face” to their diagnosis.

Misty Rushing was a patient speaker at the ATS 2018 International Conference.  Read her story.

Join Inspire!
 

"Overcoming the Isolation of Living with a Chronic Illness"

If you have scleroderma, you might have some thoughts on isolation to share in the online scleroderma support group at Inspire.com.  Managed in cooperation with the Scleroderma Foundation, the group has more than 40,000 members with scleroderma, who are happy to share their experience.

Join the conversation at Inspire.com.

Reach for the Cure Virginia SteenVirginia D. Steen, M.D.

Reach for the Cure

“There’s never enough new researchers." 
Virginia Steen, M.D., Georgetown University Hospital

"The availability of funding absolutely directs young investigators into what field they’re going to be in.  And, that’s happening.  We’re doing pretty well with some of the clinical research, but it’s not funded by the National Institutes of Health. It’s because of the Scleroderma Foundation.  It just needs to happen more.”

Reach for the Cure.  donate today.

watch the reach for the cure video

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.

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

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


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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