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Scleroderma Foundation
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eLetter #760 | May 4, 2018  
2018 Conference Save the Date 180x270  

Conference Workshops

What are the workshop topics offered at the 2018 National Patient Education Conference in Philadelphia, July 27-29?  Here's one...

"Sjogren's in Scleroderma"
presented by Nora Sandorfi, M.D.

 

Have you registered yet? 
scleroderma.org/conference.

 

Join Inspire!
 

"Newly Diagnosed and Slightly Overwhelmed"

If you feel that way, who can you talk to?  You can talk to others who've been there and made it through those feelings in our online support community at Inspire.com.

Whatever your experience, you can share with others who understand because they have scleroderma, too.  There are more than 40,000 individuals affected by scleroderma who belong to Inspire.com.  It's a good place to go to talk to someone. 

join the scleroderma online community

Capitol Dome Cherry Blossoms Square
 

Be a Scleroderma Advocate

Sign up for the Action Alert Network!

Subscribe to our advocacy email and be notified when important issues arise that need action!  Your elected officials need to know your opinion on matters that they vote on.  Emails from the Action Alert Network include links to resources online that describe the issue and provide the online tools you need to take action. 

be a scleroderma advocate

Michigan Webinar May 2018  

Webinar:  Tips for Daily Living for Persons with Scleroderma
May 17, 2018; 7 to 9 p.m. Eastern

Janet Poole, Ph.D., O.T.R./L., F.A.O.T.A., Director and Professor of the Occupational Therapy Graduate Program of the University of Mexico, will lead an educational webinar presenting daily living skills and hand and face exercises for individuals with scleroderma.  Learn tips on how make your life more manageable. Webinar includes an hour of open discussion.

attend the webinar

Taylor and TaMetress Conference 2017  

The Conference Scholarship Fund

Each year, 50 or more individuals affected by scleroderma receive a remarkable gift, they are granted a scholarship to attend the Scleroderma Foundation's National Patient Education Conference.  Typically they are first-time attendees and often their scleroderma is recently diagnosed.  Conference can be the experience of a lifetime.  Getting to Conference can be a challenge.  That's why we need your help to ensure that monies are available to provide scholarships.  Help us share the experience of a lifetime.

Please give generously to conference scholarships

Stepping Out Logo 2018 Be Part of the Cure
 

Where Are You Stepping Out?

Be part of the cure!  It's three easy steps. 

  1. Register
  2. Fundraise
  3. Walk

Form a team with family, friends, and coworkers.  It makes fundraising fun and it builds morale at work; plus it creates awareness as you approach more people. 
Every step you take moves us closer to a cure.  

register and start fundraising today

Heartland Chapter Logo JPG  

Support Groups of the Heartland

Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems. Groups also host expert speakers from time to time. There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter. The Heartland Chapter hosts four support groups.

Iowa, Nebraska, and South Dakota support groups

Hard Word 2017 Add Your Voice  

June is Scleroderma Awareness Month

The Scleroderma Foundation will again partner with the Scleroderma Research Foundation and Scleroderma Canada to promote June as Scleroderma Awareness Month.  Our Hard Word, Harder Disease message will continue with refreshed graphics, and we will keep asking people to "Take the Pledge" to tell someone about scleroderma.  A social media "tool kit" will be available for you to promote the "Hard Word, Harder Disease" message on Facebook and Twitter and other platforms. 

www.sclerodermaaware.org

STUDY PARTICIPATION OPPORTUNITY
Fatigue Trial U Mexico
 

Seeking Young Adults with an Autoimmune Rheumatic Condition for Research Study on Fatigue

Researchers from the University of New Mexico (UNM) are seeking participants for a study on how fatigue affects life in young adults with autoimmune rheumatic conditions, such as rheumatoid arthritis, lupus, scleroderma, psoriatic arthritis, and ankylosing spondylitis. To be included, participants must be between 18-30 years old, have fatigue, cannot be pregnant, and communicate in English. The study involves completing a packet of questionnaires about fatigue and daily life and participating in a phone interview.  This study was approved by the UNM Human Research Review Committee (Version 2 - HRPO#18-198). 

Contact Janet Poole Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761

 
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Diamond
National Sponsor
Actelion JSN 2018

Platinum Conference Sponsor

Boehringer Ingelheim


Gold National Sponsor
Bayer Logo 2018 JPG

Corporate Sponsors
Genentech


 
 

 

   

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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