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Scleroderma Foundation
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eLetter #762 | May 11, 2018  
2018 Conference Save the Date 180x270  

Conference Workshop Preview

Here's a preview of a workshop to be offered during the 2018 National Patient Education Conference in Philadelphia, July 27-29.

"Lung Transplantation in Patients with Scleroderma; Controversies and Outcomes"
presented by Maria Crespo, M.D.

 

Early Bird Registration closes 5/30/18.
Have you registered yet?  
scleroderma.org/conference.

Join Inspire!
 

"Want To Travel, But Not Feeling Able??"

That's the topic of a discussion thread in the online scleroderma support group at Inspire.com.

Perhaps you have advice to share on traveling with scleroderma, or maybe you have the same question.  Inspire.com let's you share with others who 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 who understands. 

join the scleroderma online community

Capitol Hill Day 2018 Meeting
 

Advocacy Resources

You don't have to go to Washington, D.C., to advocate for people affected by scleroderma.  You can visit your U.S. Senator and U.S. Representative in their state or district office.  Even when they're in session in D.C., you can meet with their aides back home.   

Learn how to be a scleroderma advocate by watching the training videos on our Advocate Resources web page.

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 2017a  

Help Send a Newly Diagnosed Person to Conference

Coping with scleroderma is difficult.  Finding someone to talk to who also has scleroderma isn't always easy.  The Scleroderma Foundation's National Patient Education Conference is an opportunity to connect with others who have scleroderma.  Some recently diagnosed and some who have lived with the disease for many years.  The Conference Scholarship Fund is there for first-time attendees who need a little help getting to the conference.  

Please give generously to conference scholarships

Stepping Out Logo 2018 Be Part of the Cure
 

Be Part of the Cure!

Join a Stepping Out to Cure Scleroderma walk or 5K run near you. It only takes 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 ask for donations.  Every step you take moves us closer to a cure.  

register and start fundraising today

Missouri Chapter Logo JPG  

Support Groups of Missouri

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 Missouri Chapter hosts five  support groups.

Missouri 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 for our Hard Word, Harder Disease awareness campaign during the month of June.  A "tool kit" will be available for you to share messages on Facebook and Twitter and other social media 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 National 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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