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Scleroderma Foundation
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eLetter #771 | July 13, 2018  
Ticket to Work - WISE 2018
 

Ticket to Work & Reasonable Accommodations

WEBINAR:  July 25, 2018, 3 p.m. - 4:30 p.m. Eastern

Register for this Work Incentives Seminar Event (WISE) webinar featuring the Job Accommodation Network.  Presenters from the Social Security Administration's Ticket to Work Program talk about reasonable accommodations that might help you succeed during your job search and as you transition to work. Join us and find answers to questions like: What are reasonable accommodations?  How can they help me?  Should I talk about my disability with a potential employer?  What other services are available to help me on my path to work?

register or learn more

Discover Understand Overcome square
 

Now Accepting Scleroderma Research Grant Applications

DEADLINE:  September 17, 2018

The Scleroderma Foundation's peer-reviewed grant program offers two distinct funding opportunities designed to foster the development of innovative and high quality research in fields related to scleroderma.  These are the New Investigator Grant and the Established Investigator Grant.  To apply or to learn more, follow the link below, or call 800-722-4673.  

research grant applications

2018 Conference Save the Date 180x270  

Conference Workshop Preview

It's not too late to attend the 2018 National Patient Education Conference in Philadelphia, July 27-29.  The conference offers 77 different educational workshops, including:

"African Americans and Scleroderma," 
Virginia Steen, M.D.

"Medications in Scleroderma,"
Jessica Farrell, Pharm.D.

Workshop titles have been posted online in PDF form for download:  Friday, Saturday, Sunday, Kids & Teens.

Have you registered yet? scleroderma.org/conference

Kids Room Sunday 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. 

The Youth Workshop Schedule has been posted online in PDF format for download.  

Have you registered yet?  
scleroderma.org/conference

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Scleroderma & Exercise Focus Group

If you're attending the Scleroderma Foundation's National Patient Education Conference in Philadelphia, Friday, July 27 and Saturday, July 28, please consider signing up for a 90-minute focus group on barriers and facilitators to physical activity.  The group is managed by the Scleroderma Patient-centered Intervention Network (SPIN) and is open to people who have been diagnosed with scleroderma.

Contact Marie-Eve Carrier, (800) 370-5099

Uconn Health 2018UCONN Health Center
 

Research & Treatment Centers

UConn Health Rheumatology Center

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 Connecticut, go to the Rheumatology Center in the UConn Musculoskeletal Institute at UConn Health Outpatient Pavilion in Farmington.  

webinar Michigan addressing myths 2018
 

One on One with Dr. Maureen Mayes: Addressing the Scleroderma Myths

WEBINAR: August 15, 2018; 7 p.m. - 9 p.m. Eastern

This webinar is perfect for individuals with scleroderma and their caregivers.  It will provide you with updated and accurate information about scleroderma and will help to dispel the many scleroderma myths that we all hear. 

register

Stepping Out Logo 2018 Be Part of the Cure
 

How Many Years Have You Been Stepping Out?

Whether it's your first time or you come back year after year, we're grateful to you for Stepping Out to Cure Scleroderma.  If it's not your first rodeo, as they say, reach out to others on walk day to offer encouragement.  Stepping Out is like a big family to many folks.  If you're accustomed to seeing the same teams and individuals at your walk site, say hi!  The community spirit is one of the benefits of Stepping Out.  Think of it as a support group that meets once a year to stretch their legs and have a good time.   

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

Join Inspire!
 

"Tell Me About Methotrexate--What You Know, or Your Experiences"

That's a real question posed by a user, called "Buntir," in the online scleroderma community at Inspire.com.  Feel free to join the conversation and share your experience with methotrexate, or read the comments from others who've been treated with that medication.

There are more than 40,000 individuals in the scleroderma community at Inspire.com who have been affected by scleroderma.  Join today and talk to them.

join the online scleroderma community

STUDY PARTICIPATION OPPORTUNITY
Cumberland Pharmaceutical Heart
 

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.

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

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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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