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Scleroderma Foundation
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eLetter #746 | January 19, 2018  
 YouTube Johns Hopkins Reynauds

Raynaud’s Phenomenon

Raynaud’s Phenomenon is a condition that results in decreased blood flow to your fingers and toes. There are two types of Raynaud’s, primary and secondary.
Dr. Zsuzsanna McMahan from the Johns Hopkins Scleroderma Center dives into what this condition is, things to look out for, how to manage and when you should speak with a doctor. 

watch video

McMasters Univ Demystifying Medicine

Demystifying Medicine

In September 2013, McMaster University started a novel cross-disciplinary 4th year undergraduate course on selected topics from the McMaster Demystifying Medicine Seminar Series (www.demystifyingmedicine.com). Their main task was to generate educational content in the form of short presentations, animations, interviews, skits or by other creative ways to help increase understanding of complex clinical and biomedical material. This video is about scleroderma and is the first of two parts.

watch the video

 Mayo Clinic Logo

New Scleroderma Center Listing
Mayo Clinic Rochester, Minnesota

The Scleroderma Foundation is pleased to announce the listing of the Mayo Clinic in Rochester, Minnesota as a Scleroderma Treatment Center.  To be designated as a Scleroderma Center on the Foundation website, institutions must 1) demonstrate expertise in the care of patients with scleroderma; 2) conduct scleroderma research (clinical and or observational and/or laboratory-based), and 3) 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.


Public Speaking Letter Writing

Grassroots Advocacy: Public Speaking & Letter Writing Webinar
Monday, January 22, 2018; 2 p.m. Eastern

Learn gestures and body language, speaking to diverse audiences, visual aids and props, and talking about the disease. Go to https://join.me/scleroderma.org, dial 302-202-5900, enter conference ID 710-462-255.

join webinar

 20 percent Michigan webinar

The 20 Percent Scleroderma Man
Webinar For Men Only
NEW DATE: February 8, 2018, 7-9 p.m. Eastern

An educational webinar for males only who have scleroderma presented by rheumatologist, Dr. Vivek Nagaraja, from Michigan Medicine. Topics will include gender specific aspects of scleroderma.

to register

 YouTube 2016 Poole Hand & Face

Virtual Support Group Meeting
January 27, 2018, 11 a.m. - 12:30 p.m. Eastern

Presentation by Janet Poole, Ph.D., O.T.R./L.
"Hand & Face Exercises & Management of Daily Skills." Learn exercises to improve movement/function in the hands, face & mouth! 
Watch the video first.

join meeting

 PAH Voice Reprint Fall 2017 Med-IQ Gilead

PAH in Systemic Sclerosis
Learn More in a Special Article
from Scleroderma Voice

Pulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8 percent  to 12 percent of patients with systemic sclerosis (SSc).  Learn more about risk factors, screening tests, and treatment options for PAH in a special article that appeared in the Fall 2017 edition of Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation.  The article includes a questionnaire for you to complete and share with your physician.  

read about PAH in SSc

 2018 Conference Save the Date 180x270 

The 2018 National Patient Education Conference Needs a Theme!

We need your help!  This July we head to Philadelphia for our 20th annual National Patient Education Conference, but we need a conference theme and we are hoping you can help.  The theme should incorporate the Foundation’s 20th anniversary. 

Submit your idea as an email to SFinfo@scleroderma.org with subject line: “2018 Conference Theme.” 

Deadline for submissions is Friday, January 26.  
Previous conference themes: 

  • 2017 Chandler, Arizona: “Discovery in the Desert”
  • 2016 New Orleans: “Unmask the Cure”
  • 2015 Nashville: “Stomping out Scleroderma”
If we choose your slogan, we will send you a
Scleroderma Foundation prize pack.  Good Luck!

 Stepping Out Logo Resized

Stepping Out 2018

Help us take one step closer to finding a cure for scleroderma!  Join us at a Stepping Out to Cure Scleroderma walk or run near you.  Gather your family, friends, and coworkers and form a team.  Create a fundraising page on the Stepping Out website and use the online tools to request donations and manage your team. 

Find a Stepping Out walk or run near you at www.scleroderma.org/steppingout.

Clinical Trial Update
Cumberland Pharmaceutical Heart

Research Participation Opportunity

Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.

For more information, please call 615-627-4121 or email bkaelin@cumberlandpharma.com.

 
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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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