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In This Issue
SRF Webinar Series
Halt the Hurt!...Dealing with Chronic Pain
Investigators Identify New Genetic Path for Scleroderma
Cure Crew Happenings
6 Ways to Save on Medical Expenses at Tax Time
Researchers Discover Mechanism in Cells That Leads to Inflammatory Diseases
SRF Scientific Workshop



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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

 

Dear ,

 
Each person touched by scleroderma has a unique story to tell. We thank everyone who shared pictures and captions on our expanding  Hero Wall. This virtual tribute to patients and their loved ones is quickly growing. if you haven't already, please submit your image today.   

  

To become a part of our Hero Wall, just click here to upload a photo and be sure to include a caption of 20 words or less.

Patient Education Webinar Series  

Dr. Fredrick Wigley Director, Scleroderma Center at Johns Hopkins

Please join us along with Dr. Fredrick Wigley online Wednesday, April 25, 2012 at 11 AM Pacific Time for the SRF's Webinar: Scleroderma: A Complex Vascular Disease.  

 

Dr. Wigley, Founder/Director of the Scleroderma Center at Johns Hopkins, one of the largest and most respected scleroderma clinics in America, will discuss how the disease affects the body, current treatment options, what patients can expect next and how research is advancing to change the landscape of disease management. Register now.  

 

If you were not able to join us for our previous webinars, please visit our site to listen to the recorded sessions.    

Halt the Hurt! Dealing with Chronic Pain
 
Pain-it's something we've all experienced. From our first skinned knee to the headaches, back pain and creaky joints as we age, pain is something we encounter many times. Most pain is acute and goes away quickly. But in some cases, when pain develops slowly or persists for months or even years, then it's called chronic pain, and it can be tricky to treat.

Chronic pain is a huge problem. Over 115 million people nationwide-about 1 in 3 Americans-suffer from some kind of long-term pain. It's the leading reason that people miss work. Read more... 

 

Click here to learn more about current treatments. 

A Group of SRF Investigators Identify New Genetic Path for Scleroderma
 
A genetic pathway previously known for its role in embryonic development and cancer has been identified as a target for systemic sclerosis, or scleroderma, therapy. The finding, discovered by a cross-disciplinary team led by John Varga, MD, John and Nancy Hughes Distinguished Professor of Rheumatology at Northwestern University Feinberg School of Medicine, was recently published in the journal Arthritis & Rheumatism.

"We showed, for the first time, that the Wnt signaling pathway is abnormally activated in scleroderma patients," said Varga, who is also a physician at Northwestern Memorial Hospital. "This is significant for three reasons. First, it gives a better picture of scleroderma and fibrosis in general. Second, it provides a strategy for assessing disease severity, progression, and activity. And third, it opens a door for the design of treatments that aim to block the Wnt pathway and restore its normal controlled activity." Read more...

  

Cure Crew Happenings

 

The Crew is growing! We welcome our new members: 

 

Lauren Murray of Alexandria, Virginia
Cat McCall of West Lynn, Oregon
Jose Diaz of New York, New York
Chelsea Pressly of New Hebron, Mississippi
Deborah Kloeblen of Bayonne, New Jersey 

 

Here's a list of Cure Crew events:

  • SRF's very own Amy Hewitt is running her first 5K in honor of all the patients that have inspired her. Visit her "Run Like I'm Being Chased" page to learn more.  
  • Julie Hullum and friends in Grovetown, GA will host a memorial motorcycle ride this June. Click here to learn more.
  • Dr. Laura McChesney will bike 1,500 miles for scleroderma research. visit her page on Firstgiving.  
  • Wendy Borland introduced scleroderma to 300 co-workers at a recent office event by sharing the SRF's Moving Forward video.  

Support an existing Cure Crew member who is not currently hosting an activity by visiting our growing member list and clicking "donate" to make a contribution on their behalf. They'll be notified of your gift and will appreciate your support of scleroderma research.

 

Whether you plan to host a special fundraising activity like a race, book sale or dinner party...or simply send an email to friends and family sharing about scleroderma and asking for their support via your personal Cure Crew page, every member makes a difference. Follow this link to become a member today!  

 

Stay tuned for the SRF's new Cure Crew eNewsletter. It is specially designed for those wanting to learn more about awareness-building and fundraising. Read about Crew Members who are making a difference. Click here to sign-up!    

When preparing taxes, many people make the mistake of overlooking deductible health care expenses, which can reduce the overall cost of medical care and insurance. In fact, according to Michael Mahoney, vice president of consumer marketing for GoHealth, an online source for health insurance, a self-reported survey conducted by the company found that most people eligible for medical deductions were missing out on savings. "We found that only about one-third of the people who thought they had deductible expenses were actually going to deduct them," Mahoney says.    

 
Here, six tips to help you avoid leaving money on the table, and to maximize your healthcare expenses during tax time.  

 

1. Take a Break on Self-Employment Taxes
People with self-employed income may be able to deduct health insurance premiums paid for both themselves and their dependents as a business expense. Just keep in mind that you cannot deduct the cost of premiums paid for any month during which you were eligible for insurance through an employer. Read more...

   

Visit the Patient News section of our site for more articles to keep you informed.    

Researchers Discover Mechanism in Cells That Leads to Inflammatory Diseases 

Cedars-Sinai researchers have unlocked the mystery of how an inflammatory molecule is produced in the body, a discovery they say could lead to advances in the treatment of rheumatoid arthritis, Type 2 diabetes and numerous other chronic diseases that affect tens of millions of people.    

The study, funded by the National Institutes of Health, is published online by the peer-reviewed journal Immunity and will appear in the March print edition.

 

The researchers identified for the first time the mechanism that leads to the production of the molecule interleukin-1beta. It is a major contributor to inflammation, which lies at the root of many serious health conditions, including atherosclerotic heart disease and some types of strokes. Read more... 

   

Visit the Research News section of our site for more articles to keep you informed.    

SRF Scientific Workshop     

 

The annual SRF Scientific Workshop was held last weekend (March 24 - 25) in San Francisco. This event brought together SRF-funded investigators, promising new applicants, along with guest speakers such as Dr. Atul Butte from Stanford University and Dr. Frank Nestle, Professor at King's College London School of Medicine. Over the course of the two days, this distinguished group, led by the SRF Scientific Advisory Board, discussed key findings from their work over the past year.

 

Collaboration is an essential component of the SRF research program and by requiring all Foundation-funded researchers to attend the annual workshop, it is guaranteed that information will be shared, cross-examined and reviewed not only by the esteemed SRF Scientific Advisory Board, but also by individual researchers and outside experts from a broad variety of disciplines.

 

Stay tuned in the coming months as we share the outcomes and progress resulting from this year's work.

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