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eLetter #772 | July 20, 2018  
Science Daily
 

Why Internal Scars Won't Stop Growing: Rogue Molecules Provoke Out-Of-Control Scar Tissue, Strangle Organs

A new Northwestern Medicine study has newly identified a trigger of some fibrotic diseases and an experimental compound to treat it.  An article was published in Science Daily on July 12, 2018.  

According to John Varga, M.D., of the Scleroderma Foundation's Medical & Scientific Advisory Board, "This new study--funded in part by [the Scleroderma Foundation]--identifies a new paradign for scleroderma fibrosis treatment."

read more

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:

"How Do We Find Better Treatments?
Lee Shapiro, M.D.

"Pain Management: How to Empower Yourself Without Reliance on Opioids,"
Ginny Maril, Ph.D.

All 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

Georgetown University School of MedicineGeorgetown University Scleroderma Center
 

Research & Treatment Centers

Georgetown University Hospital

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 Washington, D.C., go to Georgetown University Hospital, PHC Building, Department of Rheumatology on Reservoir Road.  

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
 

Be Part of the Cure

Stepping Out to Cure Scleroderma is about you.  If you have scleroderma, or if you know someone who has scleroderma.  Stepping Out is about you. 

Take the time to connect with others at a Stepping Out to Cure Scleroderma walk or 5K run near you.  If there isn't one, contact us about starting one.     

sign up to walk today

My PH Team graphic
 

My PH Team

Living with pulmonary hypertension means battling a long list of symptoms and for some that includes scleroderma.  Join the social network for people living with PH on myPHteam.

myPHteam

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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

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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