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In This Issue
Webinar Series
My Approach to the Treatment of Scleroderma
Cure Crew Member Spotlight
Congrats to SRF Advisor Dr. David Botstein
Salt Linked to Autoimmune Diseases
What's Ahead for the Affordable Care Act in 2013?
Your Voice Matters!
Quick Links

The SRF is Hiring!

Would you like to be part of the team at the SRF and make a difference in the lives of scleroderma patients everywhere? The SRF is looking for a qualified candidate to fill the position of Director of Development

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We're coming back to Los Angeles on April 30 to raise funds and awareness for scleroderma research! Celebrity chefs Susan Feniger and Mary Sue Milliken along with host Bob Saget and special guests will join together for an evening of fantastic food and laughter at Cool Comedy - Hot Cuisine. Call us 800.441.CURE (2873) to learn more about availability and special pricing for patients.  

SRF Webinar Series
The next webinar in our popular series has been scheduled! Join patients, caregivers and others along with Dinora Dominguez, Chief of the Office of Patient Recruitment at the National Institutes of Health, on Wednesday, May 8 at 10 AM PST. Dinora's webinar will focus on clinical trials and the patients' role as a partner in research. She will also answer your questions about clinical trials. Register  here for the upcoming webinar.  

Coming soon...

Dr. Monique Hinchcliff of Northwestern University's Feinberg School of Medicine will share her insights on how to manage scleroderma and its complications.


Dr. Laura Hummers at the Johns Hopkins Scleroderma Center will discuss the research taking place at one of America's leading specialty clinics for scleroderma patients.

The SRF webinar series is made possible by generous grants from Novartis, Gilead Sciences and MedImmune. All previous webinars are available for free download and upcoming live webinars will be announced on the SRF website soon.
My Approach to the Treatment of Scleroderma


by Ami A. Shah, MD, MHS and Fredrick M. Wigley, MD

Division of Rheumatology, Johns Hopkins University School of Medicine 


Systemic sclerosis (scleroderma) is unique among the rheumatic diseases because it presents the challenge of managing a chronic multisystem autoimmune disease with a widespread obliterative vasculopathy of small arteries that is associated with varying degrees of tissue fibrosis. The hallmark of scleroderma is clinical heterogeneity with subsets that vary in the degree of disease expression, organ involvement, and ultimate prognosis. Thus, the term scleroderma is used to describe patients who have common manifestations that link them together, whereas a highly variable clinical course exists that spans from mild and subtle findings to aggressive, life-threatening multisystem disease.

The physician needs to carefully characterize each patient to understand the specific manifestations and level of disease activity to decide appropriate treatment. This is particularly important in treating a patient with scleroderma because there is no treatment that has been proven to modify the overall disease course, although therapy that targets specific organ involvement early before irreversible damage occurs improves both quality of life and survival. This review describes our approach as defined by evidence, expert opinion, and our experience treating patients. Read more...
Cure Crew Member Spotlight 

Julie and Alexa Armon Challenge YOU: Sunday, April 7, 2013    

Julie Armon was diagnosed with scleroderma at the age of 16 and has been dealing with this disease and its challenges on a daily basis ever since.


Sunday, April 7th, Julie and her sister Alexa will take to the ocean and hit the pavement in Florida to participate in the Nautica South Beach Triathlon, an event that includes a half mile swim, a 19 mile bike ride and a four mile run.


In their own words, "Scleroderma has affected our lives, as well as the lives of many others, and together we decided that we wanted to take an active role in trying to find a cure. Being that Scleroderma is still such an obscure disease, our goal is to raise awareness as well as help fund research." Julie and Alexa will run the race -- your challenge is to support them by making a gift in their honor.


With just days to go before the big race, they have already raised considerable awareness and nearly $7,000 to help find a cure. Perhaps most inspiring, many donations have come from people they have never personally met!


Visit their Cure Crew page to support their efforts and help make a difference in the lives of scleroderma patients everywhere.


To become a member of Cure Crew or to learn more about it, visit www.curecrew.org or call us at 1-800-441-CURE.
Congratulations to SRF Advisor Dr. David Botstein

The newly created Breakthrough Prize in Life Sciences Foundation, founded by entrepreneurs Mark Zuckerberg of Facebook, Sergey Brin of Google and venture capitalist Yuri Milner announced recently the first 11 winners of an award intended to inject excitement into the sometimes lonely, underfunded quests to understand and combat cancer, diabetes, Parkinson's disease and other maladies. 


One of the oldest recipients, David Botstein, 70, a doyen of genomics on sabbatical from Princeton, expressed some unease about the amount of money and said he would give some of it away. He thanked the sponsors but lamented that such a payout was needed to shine media and public attention the life sciences. "Over the past 30 or 40 years there has been very rapid progress but you just don't hear about it." Read more...   


Visit our site to learn more about the SRF's esteemed Scientific Advisory Board..  
Salt Linked to Autoimmune Diseases

Nanowires show sodium chloride may cause harmful T-cell growth.

The incidence of autoimmune diseases, such as multiple sclerosis and type 1 diabetes, has spiked in developed countries in recent decades. In three studies published recently in Nature, researchers describe the molecular pathways that can lead to autoimmune disease  and identify one possible culprit that has been right under our noses - and on our tables - the entire time: salt .


To stay healthy, the human body relies on a careful balance: too little immune function and we succumb to infection, too much activity and the immune system begins to attack healthy tissue, a condition known as autoimmunity. Some forms of autoimmunity have been linked to overproduction of TH17 cells, a type of helper T cell that produces an inflammatory protein called interleukin-17. Read more... 

What's Ahead for the Affordable Care Act in 2013?

This month marks the third anniversary of the Patient Protection and Affordable Care Act becoming law.

Consumers have gained access to many new benefits under the law since it was passed in 2010. They include free preventive services, new rights to appeal insurers' decisions, drug discounts for seniors on Medicare, and tax credits for small businesses.


Yet the biggest changes are set to take place less than a year from now. On Jan. 1, 2014, all Americans will be guaranteed access to health insurance coverage.


Here are some of the biggest developments to watch in 2013. Read more... 

Speak Up! Your Voice Matters.

We asked you last month to share the greatest challenge posed by scleroderma and what keeps you optimistic about the future of research. Once again, we were moved by your thoughtful responses. Thank you for sharing-
below are some of the highlights: 
  • My greatest challenge has been getting people to understand what it is, and also waiting for the unknown. I am optimistic about my future, because i feel so grateful to have been battling this disease for so long and even though I am in pain, I am still alive.
  • I have two of the CREST areas, R and E, so the greatest challenge is the not knowing where it will show up next and when.  I am optimistic that one day there will be a cure...      
  • As I sit here in a hospital bed with scleroderma with lung involvement, I pray for a treatment at LEAST for scleroderma with lung involvement...a cure would be a miracle! I am grateful to the SRF for their support at many levels...the research funds, and the doctors for specializing in this area of research. Research development and the doctors who are interested in this research area is my hope for the future.    
  • I was in an emergency room in Alberta three times in the fall of 2011 and it wasn't until the third visit that the cardiologist on call was consulted - who was also an expert in Pulmonary Hypertension. Finally I met someone who was aware of Scleroderma...I am optimistic that with continued promotion, more medical professionals will become informed.
  • The greatest challenge for our family is the unknown.  Will the progression stop with these new drugs? How will it progress? What keeps us optimistic?  We are in a land (world) of brilliant concerned dedicated and persistent scientists.  They will find the connection - hopefully in time for Brie.
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