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Faces of Scleroderma

In This Issue
SRF Webinar Series
NIH Clinical Trials and You
Cure Crew Happenings
When an Autoimmune Disorder Forces You to Alter Your Life Plans
Scientific Breakthroughs Changing Medicine
Rare Disease Day



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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

 

Dear ,

 
While scleroderma may be considered a rare disease, its impact is widespread and has touched the lives of thousands. Last month we invited you to share a photo and caption to honor a personal hero. Your messages have inspired us and we encourage you to take a look at our growing Virtual Hero Wall. If you haven't already, please submit your image today. Let's share our stories and increase awareness of scleroderma.

 

To become a part of our growing 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.  

 

This is the fourth webinar in a series designed to help patients and others in the scleroderma community understand the disease, what's being done to find a cure and what new treatments are on the horizon. 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.     

NIH Clinical Research Trials and You
 

The National Institutes of Health has created a new website, NIH Clinical Research Trials and You to help people learn more about clinical trials, why they matter, and how to participate. From the first cure of a solid tumor with chemotherapy to the use of nitroglycerin in response to heart attacks, clinical research trials - or research studies involving people - have played a vital role in improving health and quality of life for people around the globe.

 

Clinical trials are essential for identifying and understanding ways to prevent, diagnose, and treat disease. Research has shown that among the greatest challenges to recruitment of volunteers is the lack of general knowledge about what trials involve, where they are carried out, and who may participate.

"The ability to recruit the necessary number of volunteers is vital to carrying out clinical research that leads to health and medical advances," said NIH Director Francis S. Collins, M.D., Ph.D. "This new, centralized resource will make it much easier for the public and health professionals to learn about clinical trials and how people can participate in them." Read more...  

Cure Crew Happenings

 

Check out this month's featured volunteer fundraiser, Barbara Sheets. She's running the Los Angeles Marathon March 18th in honor of her husband, Alden. So far Barbara has raised nearly $2,000 for scleroderma research. We applaud Barbara and her amazing enthusiasm and look forward to sharing her race results with you next month! Check her out and learn more about her "Amazing Race".

This month we also want to introduce Julie Hullum from, Grovetown, GA. This June along with friends and family Julie will host a memorial motorcycle ride to raise funds and awareness for scleroderma research. Click here to learn more.

 
Don't forget to join our 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 an Autoimmune Disorder Forces You to Alter Your Life Plans   

When Patti Substelny of Cleveland, Ohio, turned 40, she found herself in a place that many people with autoimmune disorders are familiar with: Her life with a chronic illness looks nothing like what she planned when she was younger. Formerly a vice president of human resources for a bank, Substelny is now a dedicated volunteer and advocate for people with multiple sclerosis. She's using the lessons she has learned along the way to help others faced with changing their life course because of autoimmune disorders.

Adapting to a Chronic Illness -- For 10 years after Substelny learned she had MS, she climbed the corporate ladder while keeping her disorder in check. "In 2007, I had several exacerbations that were coming in shorter frequency and longer duration," she says. "I then determined with my doctor and my case manager that the stress of my job was leading to the difficulties I was having."  Read more...  

  

Click here to read more tips for living with scleroderma.  

Video - Dr. Francis Collins NIH Director Discusses Scientific Breakthroughs Changing Medicine


Dr. John Reed, Professor and CEO of Sanford-Burnham Medical Research Institute sits with Dr. Francis Collins, Director of the National Institutes of Health (NIH) in Bethesda, Maryland to discuss three scientific breakthroughs that are changing medicine. In this video Dr. Collins shares the advances made possible by the Human Genome Project and how stem cell therapy is impacting disease treatment.  

 

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

SRF Supports Rare Disease Day    

 


 

Join us along with others in the rare disease community in supporting Rare Disease Day - tomorrow, February 29, 2012. For 24 hours on Rare Disease Day, you can send an email to President Obama, your representatives in Congress, your governor, and your state legislators through the NORD website, the Rare Disease Day US website, or the Rare Disease Day US Facebook page.  It's quick and easy.  Anyone can do it.  Just use the basic text provided that applies to the entire rare disease community.  Personalize it with your own hopes or concerns.  Enter your zip code, and click to submit.  You'll receive a "Handprints on the Hill" badge that you can share on Facebook or elsewhere to tell your friends you participated in this campaign.  Watch for this from midnight Feb. 28th to midnight Feb. 29th! Get involved!  

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