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In This Issue
Research Spotlight
SRF Scientific Workshop
Susan Feniger Does It Again
Cure Crew
Heart Involvement in Systemic Sclerosis
Sildenafil Reduces Raynaud's Frequency
New Scleroderma Legislation
Cool Comedy - Hot Cuisine

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Insights eNewsletter
Dear ,

We're pleased to share with you the Scleroderma Research Foundation's March issue of Insights eNewsletter. The goal of our monthly update is to keep you informed on Foundation-related activities and news impacting the scleroderma community. This issue is filled with a variety of topics. In particular, we are enthusiastic about the results coming out of Dr. Howard Chang's lab at Stanford. As well, we are encouraged by the tenacity of Senator Gillibrand (D-NY) and her efforts to promote scleroderma-related legislation to benefit patients and their loved ones.
Research Spotlight

Researchers Discover Molecular Determinant of Cell Identity

SRF-Funded Investigator Howard Chang,

MD, PhD, Associate Professor of Dermatology at Stanford Medical School, is the senior author of this study, published online March 20 in Nature.

If a big bunch of your brain cells suddenly went rogue and decided to become fat cells, it could cloud your decision-making capacity a bit. Fortunately, early in an organism's development, cells make firm and more-or-less permanent decisions about whether they will live their lives as, say, skin cells, brain cells or, well, fat cells.

Those decisions essentially boil down to which proteins, among all the possible candidates encoded in a cell's genes, the cell will tend to make under ordinary circumstances. But exactly how a cell chooses its default protein selections from an overwhelmingly diverse genetic menu is somewhat mysterious. Read more...  


Click here to learn more about the SRF's research program.  

SRF Scientific Workshop

The annual SRF Scientific Workshop is being held this weekend (March 26 - 27) in San Francisco. This is the Foundation's most anticipated event of the year. Since our founding in 1986, the Workshop has been the culmination of what the SRF is all about: bringing together scientists and clinicians from a variety of disciplines in an effort to unravel the mysteries of scleroderma.
The synergy created among some of the most dedicated minds in scleroderma research is unique; the exchange of ideas and resulting collaborations will determine the next steps for vital research progress that will lead us to improved therapies and a cure.
This year, our workshop will include project updates from currently funded investigators, as well as new grant applicants and guest speakers from the biotech and research communities.
We look forward to sharing their progress with you in the coming months.
Susan Feniger Does It Again For The SRF!
Susan Feniger


Susan Feniger, an SRF founding board member, one of the Food Network's Too Hot Tamales and a Bravo Network Top Chef Master has once again put her culinary expertise to work for the benefit of scleroderma patients. At an event in Maryland hosted by SSP America, Susan participated in a celebrity Cook-Off that pitted her against other top chefs from around the country. With a $50,000 total prize package at stake, some of America's top culinary talent passionately cooked up their favorite item for judges and attendees to enjoy. After the votes were tallied, Susan came out victorious with her Peruvian Ceviche Tostaditas, winning the top prize of $25,000 for the SRF. We thank Susan for her tremendous commitment to scleroderma research and to the patients affected by this disease.  


Visit the SRF website to learn more about our Board of Directors.  

Cure Crew News 

Cure Crew LogoThe Cure Crew is growing! We're looking for people just like you to help raise funds and awareness for scleroderma. Sign up today! It's fun, it's easy and we could use a hand.


Here's a list of upcoming Cure Crew events that you can support:

  • Cure Crew member Robert Miller and his popular 60's cover band Side B will be performing at the Bitter End in New York on April 30 at 7 PM. Admission is $15 and proceeds will benefit the SRF. For more information, visit Side B's website or call the Foundation at (800) 441-CURE.  
  • Show some support for an existing Cure Crew member who is not currently hosting an activity by visiting our growing member list and clicking "donate" to make a contribution on their behalf. They'll be notified of your gift and will appreciate your support of scleroderma research.


Whether you plan to host a special fundraising activity like a race, bowl-a-thon or dinner party...or simply send an email to friends and family sharing about scleroderma and asking for their support via your personal Cure Crew page on our website, every member makes a difference.


Join today! And don't forget, as we grow the program, the first 50 Cure Crew members will be entered into a drawing to win a $300 American Express gift card.  
Heart Involvement in Systemic Sclerosis Underappreciated

Cardiac abnormalities were detected by magnetic resonance imaging in three-quarters of an unselected consecutive series of systemic sclerosis patients, underscoring the impressive frequency of heart involvement in this collagen vascular disease.

"The heart is something we often forget in scleroderma. The heart disease is underestimated," Dr. Fredrick M. Wigley said at a symposium sponsored by the American College of Rheumatology. Read more...  

Visit our website for more news impacting the scleroderma community.
Sildenafil Reduces Raynaud's Frequency in Patients with Systemic Sclerosis


Researchers in Europe reported that treatment with modified-release sildenafil significantly reduced the frequency of attacks of Raynaud's phenomenon in patients with limited cutaneous systemic sclerosis (lcSSc), also known as scleroderma. The double-blind, placebo-controlled trial found that sildenafil was well tolerated with only some subjects experiencing minor or moderate side effects. Full findings are available in the March issue of Arthritis & Rheumatism, a journal published by Wiley-Blackwell on behalf of the American College of Rheumatology (ACR). Read more...   


For more information on current treatments click here.  

Scleroderma Legislation

The Scleroderma Research Foundation is encouraged by newly proposed legislation to expand the federal government's focus on scleroderma research. A new bill, S. 649, that aims to expand the scleroderma research and awareness activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Centers for Disease Control and Prevention has been introduced by Senator Kirsten Gillibrand (D-NY). The proposed legislation is a follow up to S.B.1545 and its companion bill H.R. 2408, the "Scleroderma Research and Awareness Act" in the 111th Congress. Read more...
Coming in May... A Signature Fundraising Event


CCHC San FranciscoHeld in New York, Los Angeles and San Francisco, Cool Comedy - Hot Cuisine is the Scleroderma Research Foundation's signature fundraiser. It's a night of gourmet cuisine and world-class comedy hosted by comedian Bob Saget, featuring the foods of celebrity chefs Susan Feniger and Mary Sue Milliken (the Food Network's Too Hot Tamales) and past appearances from some of the biggest names in comedy, including Jimmy Fallon, Jay Leno, Conan O'Brien, Jerry Seinfeld, Sarah Silverman, Jon Stewart and Robin Williams. The event often features a musical guest (previous guests have included Sheryl Crow, Dave Koz, John Mayer and others). Attendees include many who have been directly or indirectly affecty by scleroderma and luminaries from the worlds of television, film, music and business.


The next event scheduled for May 4, 2011 at the Palace Hotel in San Francisco. Individual seats are $500 ($250 for patients) and will be on sale beginning in April. Tables of ten and premium Patron Level seats are available now. To reserve space or for more information, visit our website or call 800-441-CURE (2873).

The Scleroderma Research Foundation is committed to funding the most promising, highest quality research aimed at improving the lives of those living with scleroderma. Thank you for making our progress possible.


Amy Hewitt
Executive Director
Scleroderma Research Foundation
Make a Donation 1-800-441-CURE (2873)