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In This Issue
Webinar Series
My Approach to the Treatment of Scleroderma
Cure Crew Member Spotlight
Salt Linked to Autoimmune Diseases
Your Voice Matters!
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

Dear ,

 

The Foundation celebrated its 29th Cool Comedy-Hot Cuisine on April 30th at the Four Seasons Beverly Wilshire in Los Angeles. More than 400 guests enjoyed an unforgettable evening hosted by Bob Saget with appearances by Bill Bellamy, Craig Ferguson, Jeff Garlin, Jimmy Kimmel, Jeff Ross and special musical guest Michael Bolton.

 

The 'Hot Cuisine' was provided by Bravo Top Chef Masters Susan Feniger and Mary Sue Milliken. Thank you to presenting sponsor Actelion Pharmaceuticals and to Delta Air Lines for their extraordinary commitment to a cure. With eight live auction pacages and a matching grant sponsored by Actelion, the event raised more tha $515,000 for scleroderma research and proved once again that sometimes laughter is the best medicine.    

SRF Webinar Series
 
The next webinar in our popular series is scheduled for this Wednesday, May 22 at 10AM PDT. Join the discussion with scleroderma expert Dr. Monique Hinchcliff of Northwestern's Scleroderma Center as she provides insights into scleorderma treatment options with focus on gastrointestinal symptoms. Register here for the webinar.
 

July 12, 2013 10:30 AM PDT - Dr. Lorinda Chung at the Stanford University Scleroderma Center will discuss skin manifestations in scleroderma. Register here.  

 

September 17, 2013 10:00 AM PDT - Dr. Laura Hummers of the Johns Hopkins Scleroderma Center will share what is new in the world of scleroderma. Register here.  

 

Next up... 
The SRF webinar series is made possible by generous grants from Novartis, Gilead Sciences and MedImmune. All previous webinars are available for free download on the SRF website.
Clinical Trials - Want to learn more?

  

Last week's webinar, Clinical Trials: Consider the Possibilities, led by Dinora Dominguez at the National Institutes of Health (NIH) Clinical Center, focused on how patients and those who care about them can get involved in the clinical trial process. At the time of our webcast, there were more than 62 scleroderma related trials currently enrolling. Considering that it was just a few short years ago that the number of scleroderma trials was in the single digits, this is remarkable progress. Let us help you learn more about enrolling in clinical trials. Check out the resources available on our site here.   

 

A recent blog post by Dr. Francis Collins, Director of the NIH, reflects on the advancements clinical trials are making possible. The post tells the story of 17 year-old Alex Barton, who was diagnosed at just 14 months old with Neonatal-Onset Multisystem Inflammatory Disease (NOMID).  

 

The SRF is especially proud to share that Dr. Dan Kastner, a member of our Scientific Advisory Board, played a key role in bringing relief to those who suffer from NOMID. Read this touching story. 

Project Scleroderma: Beneath the Surface 
 
The SRF is proud to premiere Project Scleroderma: Beneath the Surface, a short video featuring the stories of patients and te imortance of research.

The Scleroderma Research Foundation partnered with Christy Selfridge, who lost her mom to scleroderma, and the team at New Pace Productions to develop this six-minute film that shares the struggles of patients living with scleroderma as well as the promise that medical research holds for the future in terms of better treatments and a cure.

A feature length documentary produced by New Pace is in the works to bring international awareness to scleroderma. Look for more information on our website soon. 

 

Visit our YouTube page to see this and other scleroderma-related videos.   

Scleroderma Awareness Month 
   

Here are some ways to play an active role in the scleroderma community and make a difference in helping to build awareness: 

  • Write your local congressional representatives (both Senate and House of Representatives) urging for their support of H.R. 1429
  • Share your scleroderma story with your local newspaper, television station or other community media outlet
  • Read My Mom Has Scleroderma to your child's elementary school classroom
  • Wear your scleroderma awareness bracelets with pride and offer to buy some for friends or family
  • Make a statement or share our new video on Facebook, Twitter and other social media outlets and encourage people to get involved
  • A letter campaign can bring both funds AND awareness to help find a cure by involving friends and family. Best of all, we can help you. Call us at 1-800-441-CURE to learn more.
Speak Up! Your Voice Matters.
Let's see what you know! This month we're going to test your Raynaud's Phenomenon knowledge. Take our short eight-question quiz and we'll post the answers in our June enewsletter. Take the quiz now.
 
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