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In This Issue
SRF Webinar Series
Patient's Fear of Being 'Difficult' May Hurt Care
Scientists Identify Agent That Can Block Fibrosis of Skin, Lungs
My Mom's Special
Your Voice Matters!
Ask the Expert - Digital Ulcer Disease in Systemic Sclerosis
Hero Wall
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

Dear ,

   

The SRF announces more than $1,000,000 in research funding for its 2012-2013 fiscal year.  

 

As vigilant stewards of our donors' resources, the SRF funds only the research showing the most promise to benefit patients. Our growing portfolio of projects is just one result of an expanding pool of talented investigators who are committed to making new discoveries about this complex disease.

 

With two new projects at University of California, San Francisco (UCSF) and a consortium combining talents at Stanford and UCSF, we aim for a better understanding of the biology behind scleroderma and its signature symptoms. The Foundation is grateful to supporters who allow us to continue our investment in basic science, clinical Scleroderma Centers of Excellence and other translational projects vital to new therapies and a cure.   

  

For more detailed information on the 2012-2013 grant recipients, please visit the SRF Website here.  

SRF Webinar Series  

You're invited to join SRF Board Member and actor/director Bob Saget for our next webinar on June 28 at 11 AM PDT. Bob has been connected to the SRF since 1992. He will discuss the loss of his sister to scleroderma, his involvement as a Board Member and advocate for patients at the Scleroderma Research Foundation as well as how others can help to find a cure.  

 

The unscripted Conversation about Scleroderma will also feature Luke Evnin, PhD, Chairman of the Board of Directors, who will join Bob to discuss current research as well as what patients can expect next. A Q&A session will conclude this webinar, the fifth in our series. Register here to join us live on June 28 at 11AM PDT. 

  
 

All previous webinars are also available on the SRF Website.    

Patient's Fear of Being 'Difficult' May Hurt Care

Hugo Campos doesn't view himself as a difficult patient. But he senses his doctors' exasperation with him because of his insistence he be given all the medical information they have about him.

"I want to be empowered, I want to be in charge, I want to know what's going on," said the Oakland resident, 45, who has repeatedly asked for the raw data from the defibrillator implanted in his chest to regulate his heart.  That's information currently available only to doctors and device makers.

 

"My understanding of their perception is they want me to consent, comply and basically shut up - to let them do their job," he said.  Read more... 

Scientists Identify Agent That Can Block Fibrosis of Skin, Lungs
 
Researchers at the University of Pittsburgh School of Medicine have identified an agent that in lab tests protected the skin and lungs from fibrosis, a process that can ultimately end in organ failure and even death because the damaged tissue becomes scarred and can no longer function properly. The findings were published in Science Translational Medicine.

There are no effective therapies for life-threatening illnesses such as idiopathic
pulmonary fibrosis and systemic sclerosis, which cause progressive organ scarring and failure, said senior author Carol A. Feghali-Bostwick, Ph.D., associate professor, Division of Pulmonary, Allergy and Critical Care Medicine, and co-Director of the Scleroderma Center, Pitt School of Medicine. Read more...
My Mom's Special - A Children's Book to Benefit the SRF
  

Cure Crew Member Meredith Allister and her daughter, scleroderma patient Andrea Oakland, are helping to raise scleroderma awareness -- one child at a time. My Mom's Special is a 25-page children's book authored by Andrea, with illustrations by Meredith. Their efforts are working! As one example, a third grader in Maine shared the book with her class earlier this month, resulting in 30 new people who now know more about scleroderma, its symptoms and its impact on a family.   

 

Order this charming book now for just $20. Your entire contribution, less shipping fees, will be used to fund scleroderma research. The Foundation thanks Meredith, Andrea and their publishing sponsor for donating this book for others to enjoy.

Speak Up! Your Voice Matters.

For those curious about last month's Clinical Trials Survey results - Here's a summary:

 

As background, a whopping 75% of respondents to our April survey on clinical trials were scleroderma patients with the next largest group being friends or family members of patients. Nearly 95% have never participated in a clinical trial but 80% would be interested or very interested in doing so in the future (only 14% were uninterested). So, why the disparity? It seems more knowledge about currently enrolling trials, their benefits and possible risks is needed.
 
The number one motivator for participation (47%) was a desire to help accelerate medical research with access to expert medical advice (40%) a close second. Somewhat surprisingly, the desire to try an experimental treatment was not a motivating factor. The factors preventing most from participation in a trial were: (1) fear of possible side effects; (2) lack of information and; (3) too much travel required. One hundred percent of respondents receive their information from the SRF website, clinicaltrials.gov or the National Institutes of Health website. Maybe they're just not reading enough about clinical trials?

The primary takeaway from our April survey is that with more than 30 ongoing clinical trials in scleroderma, patients lack the knowledge and comfort level to pursue participation. Our site provides additional information on sourcing and the NIH clinical trials site provides access to patient and investigator stories that give insight to the process and its many benefits.

This month's topic:  Scleroderma Awareness Survey ButtonGiven that June is Scleroderma Awareness Month, we would like to hear more about how you first became 'aware'. Tell us what you think!  Take our seven question survey. Results will be featured in next month's enewsletter.  

Ask the Expert - Digital Ulcer Disease in Systemic Sclerosis


Digital ulcers are a frequent manifestation of systemic sclerosis, affecting approximately half of all patients with the multisystem connective tissue disorder. Often persistent and recurring, these ischemic wounds tend to be slow-healing and difficult to manage. In addition to pain and disability, severe complications such as tissue loss, infection, gangrene, autoamputation, and septicemia can exacerbate the clinical burden by an order of magnitude, according to Christopher Denton, Ph.D., director of the Center for Rheumatology at University College London. Read more... 


Visit the Patient News section of our site for more articles like this.  

Hero Wall      

Each person touched by scleroderma has a unique story to tell. We are grateful to everyone who is sharing pictures and captions on our expanding Hero Wall. The wall was recently updated to include new pictures of our heroes. This virtual tribute to patients and their loved ones is quickly growing. If you haven't already, submit an image today.   

  

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

Make a Donation 1-800-441-CURE (2873)