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Scleroderma Foundation
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eLetter #767 | June 15, 2018  
Hard Word 2018 Toolkit  

Scleroderma Awareness Month

The online toolkit makes it easier than ever to find and share social media posts with your friends during Scleroderma Awareness Month. Access them at HardWord.org.  

social media toolkit

2018 Conference Save the Date 180x270  

Conference Workshop Preview

Among the informative workshops offered at the 2018 National Patient Education Conference (7/27-29) in Philadelphia are the following:

"What Your Dentist and Your Rheumatologist Want to Know about Scleroderma and Oral Health"
David Leader, D.M.D.  M.P.\H.

"Newly Diagnosed: Feeling Like a Deer in the Headlights"
Ron Sasso, M.S., L.P.C., C.B.I.S.T.

Have you registered yet?  
scleroderma.org/conference.

Kids Room Conference 2018  

Kids & Teens at National Conference

The Kids & Teens program at the National Patient Education Conference is an exceptional experience for youth ages 5 to 17, who have scleroderma, or have a parent with scleroderma.  Siblings and parents or caregivers benefit, too.  The weekend is filled with fun learning and activities specific to their needs. 

Have you registered yet?  
scleroderma.org/conference.

AARP Father Son Caregiver
 

This Father's Day, Celebrate Male Family Caregivers

This Father’s Day, AARP Policy’s Jean Accius celebrates the important role men play in family caregiving.

read the blog

Full-Time Patient Full-Time Student College Magazine
 

"From Full-Time Patient to Full-Time Student in Less Than 60 Days"

IPublished in collegemagazine.com, this article by Lauren Roberts addresses the challenges of being a college student with a chronic illness.

read more

Join Inspire!
 

"What Would You Want to Tell Someone Newly Diagnosed with Scleroderma?"

That's a good question.  It was asked by a user named "Prairie7" in the online scleroderma community of Inspire.com.  Those of you who've been there can offer comfort and encouragement.  Those who are going through the often difficult experience of a scleroderma diagnosis have a whole village ready to help.  

join the scelorderma online community

Virginia Steen M.D.
 

Reach for the Cure

“The gap in available funding creates a far less promising environment for up and coming scientists.  Receiving grants is the only way to establish and maintain a successful laboratory.  It is only natural that researchers tend to follow the path of study that offers readily available dollars.”   - Virginia Steen, M.D.  

donate today

Stepping Out Logo 2018 Be Part of the Cure
 

Give Others a Chance to Share Your Journey

Stepping Out to Cure Scleroderma is a moment for family and friends to gather in support of a loved one who is coping with the challenges of scleroderma, sometimes fighting for their lives.  That energy, that emotion is what many people never see.  Find a way to share your story of scleroderma and you just might be surprised at the reaction.  So few people know what living with scleroderma means, when they do understand they often feel compelled to take on some of the burden by giving and maybe even joining your team.  

Be part of the cure, sign up to walk today!

Tennessee Chapter Logo JPG  

Support Groups of Tennessee

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 Tennessee Chapter hosts four  support groups, including a telephone group.

Tennessee support groups

PAH in SSc Med-IQ CME Online  

Free Online CME Course: "Increasing Physician Awareness of PAH in SSc"

The Scleroderma Foundation is pleased partner with Med-IQ to present a free online CME publication that discusses guideline recommendations for pulmonary arterial hypertension (PAH) screening in patients with systemic sclerosis (SSc).  The article presents key insights on available treatment options for PAH.  In addition, it is enhanced with audio clips from an expert roundtable discussion on the increased risk of PAH in SSc, signs and symptoms that should prompt further evaluation for PAH, and the importance of communication among the multidisciplinary team.

This 30-minute CME course expires July 13, 2018,
so click on the link below to get started.
(Online CME Course: Increasing Physician Awareness of PAH in SSc)

Questions? Call (toll-free) (866) 858-7434, e-mail info@med-iq.com, or visit www.Med-IQ.com/a1034

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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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

 

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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