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In This Issue
Medication Side Effects
Advisor Spotlight
Cure Crew
New Genetic Region Associated with Scleroderma Identified
Rare Disease Day
Cool Comedy - Hot Cuisine

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Insights eNewsletter
Dear ,

Happy Valentine's Day from all of us at the Scleroderma Research Foundation. This year, we're making it easy to support the Foundation and send a little love to the special people in your life. For just $20, we'll send an elegant Valentine's Day card with your personal message to the recipient of your choice. By sending a Valentine (or two) you can help us to raise the funds necessary for improved treatments and a cure! Just (1) click the link below to make an online donation; (2) check the "in honor" box in the tribute section; (3) fill out the name and contact information for where you'd like us to send your Valentine, and (4) write your personal note in the comments field at the bottom (we'll know it's for Valentine's Day). If you want to give more than $20, great! In fact, we'll show a little love back to the individual who makes the largest Valentine's Day gift. You'll receive a special Valentine Surprise in appreciation of your generous support. Send your Valentine today by clicking here.
Visiting Your Doctor: Medication Side Effects

Medication side effects are common-
but when should you speak up?


Side effects may occur with any new treatment, including new medications, placement of a new medical device, surgery, or even physical or occupational therapy. We usually think of side effects when we begin to experience bad changes-when the treatment introduces new worrisome symptoms or problems. Most treatments have some sort of side effect associated with them, and many of us may wonder if side effects are simply the price we must pay for a necessary treatment.  Read more...  


Visit our website to learn more about common scleroderma medications and many of their potential side effects here.    

February 2011 Spotlight: Dr. Dan Kastner, SRF Advisor
Dr. Dan Kastner


"Scleroderma is at once one of the great unsolved problems of modern medicine and a grand opportunity for biomedical research," states Dr. Dan Kastner, the newest member of the Scleroderma Research Foundation's Scientific Advisory Board. Dr. Kastner brings a unique background and perspective to the SRF, a blend of philosophy, clinical rheumatology, human genetics, basic immunology and administration uncommon in the hyper-specialized world of modern medical research. 


 Born and raised in Lockport, New York, a small city near Niagara Falls, Dan grew up in post-World War II working class America. His father, the son of German immigrants, dropped out of high school to work in the family auto repair shop; his mother, a stay-at-home mom, cared for Dan and his handicapped older brother. Read more... 

Cure Crew News 

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

Whether you plan to host a special fundraising activity like a race, bowl-a-thon or dinner party...or just send a simple 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 Cure Crew today. A one-time $25 membership fee includes an SRF Cure Crew T-shirt, a welcome kit filled with creative ideas and tips and access to SRF staff as well as resources that will guide you to success as you help us to increase scleroderma awareness while raising the funds necessary to find a cure.  

To learn more about Cure Crew and how you can help the Team to make a difference click here.
NIAMS logo
Scientists Identify New Genetic Region Associated with Scleroderma

New research supported, in part, by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has identified a new genetic link to systemic sclerosis (also known as systemic scleroderma) and confirmed three previously discovered links to the disease, which can cause thickening of the skin, narrowing of blood vessels and scarring of internal organs.


The study, which used a technique called genome-wide association to compare the genes of 2,296 people with systemic scleroderma to 5,171 without the disease, directed the scientists to a region of the genome not previously associated with the disease known as CD247. These findings, reported in the journal Nature Genetics, were confirmed during a second study involving 2,753 people with systemic scleroderma and 4,569 without the disease. The genetic material from the patients was collected through a collaboration of medical centers in the United States, Spain, Germany and the Netherlands.  Read more... 

Click here to view the research projects currently funded by the SRF .
Millions Around World To Observe Rare Disease Day


The SRF will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2011. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.


"There are nearly 30 million Americans--and millions more around the world--affected by rare diseases," said Peter L. Saltonstall, president and CEO of NORD. "Everyone knows someone with a rare disease.  But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers. This leaves patients and families without hope for a better future."


For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org).

A Signature Fundraising Event


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)