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Webinar Series
Pulmonary Hypertension Screening
Cure Crew Update
Caregivers
Your Voice Matters!
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 
SRF Webinar Series

Join the SRF and Dr. Laura Hummers, Co-Director of the Johns Hopkins Scleroderma Center for a live webinar, What's New in the World of Scleroderma, on Tuesday, September 17 at 10:00 AM PDT.
Register here.   

 

This webinar and all others in our series are made possible by generous grants from Novartis, Gilead Sciences and MedImmune. All previous webinars are available for free download on the SRF website.

 

Next up in our series will be psycho-social issues of dealing with a chronic illness and pain management. Details and dates coming soon!
Digital Ulcer Study in Diabetic Patients May Result in New Treatment Options for Scleroderma Patients
Osiris Pharmaceuticals has just announced the tremendous success of a Phase III clinical trial for Grafix®, their cellular repair matrix product. Although no studies have been conducted on scleroderma patients, the SRF is cautiously optimistic that similar results may be achievable for scleroderma patients suffering from digital ulcers. Talk to your doctor about the possibilities.
 
Osiris reported on August 13, 2013 that its multi-center, randomized, controlled clinical trial comparing the safety and effectiveness of Grafix® to standard of care in patients with chronic diabetic foot ulcers had met the pre-specified stopping rules for overwhelming efficacy as determined by the data monitoring committee during a planned interim analysis.  Read more...
Cure Crew Update

 

Pogo Superstar NEW YORK - July 27, 2013 - Cure Crew member James Roumeliotis broke the Guinness World Record for the most pogo bounces without a single break. He bounced 70,271 times in an effort to raise funds and awareness for scleroderma research as part of the 10th Annual Pogopalooza. Support James by making a donation on his Cure Crew page and read more about his sensational stunt to help scleroderma patients.

Reprogramming Adult Cells to Produce Blood Vessels
 
Individuals with heart disease, diabetes, and non-healing ulcers (which can lead to amputation) could all benefit greatly from new blood vessels to replace those that are diseased, damaged, or blocked. But engineering new blood vessels hasn't yet been possible. Although we've learned how to reprogram human skin cells or white blood cells into so-called induced pluripotent stem (iPS) cells-which have the potential to develop into different cell types-we haven't really had the right recipe to nudge those cells down a path toward blood vessel development.

But now NIH-funded researchers at Massachusetts General Hospital in Boston have taken another step in that direction. Read more... 

 

For more news from the research front click here.  

7 Ways to Keep Your Relationship Strong Despite a Chronic Illness
 

Having a chronic illness such as diabetes, arthritis, or multiple sclerosis can take a toll on even the best relationship. The partner who's sick may not feel the way he or she did before the illness. And the person who's not sick may not know how to handle the changes. The strain may push both people's understanding of "in sickness and in health" to its breaking point.

 

Studies show that marriages in which one spouse has a chronic illness are more likely to fail if the spouses are young. And spouses who are caregivers are six times more likely to be depressed than spouses who do not need to be caregivers. Read more...  
Speak Up! Your Voice Matters.

 

Last month we asked you to share if/how scleroderma has changed your diet or eating habits:

  

100% of respondents indicated that scleroderma caused the need for "some restrictions" in their diet. Roughly 80% reported problems with either acid reflux or heartburn and 40% reported difficulty in swallowing and digestion. Chewing problems were a problem for 20% of respondents.

 

fresh foods Survey results indicated these foods caused the most problems:

  • Caffeine
  • Spicy foods
  • Some citrus fruits or other acidic foods

And, these foods were reported to help respondents feel better:

  • Ginger tea
  • Steamed rice
  • Fresh vegetable juices
  • Yogurt
  • Chocolate! (clearly, the Wunderfood)

Chef Susan Feniger In this month's issue of Caring Voice magazine, Top Chef Master and SRF Board Member Susan Feniger shared the inspiration behind her long-standing commitment to scleroderma patients and one of SRF Founder Sharon Monsky's favorite recipes. Check it out here!

 
This month:

Share one of your favorite fall season recipes with our online community. We'll include a sampling of recipes in the September issue of Insights eNewsletter and, if the response is overwhelming, we'll make this a recurring department of the eNewsletter.
 
Share your favorite recipe here! 
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