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Insights eNewsletter FOR THE SCLERODERMA COMMUNITY |
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Dear ,
Funding innovative medical research to the benefit of scleroderma patients is at the very core of our mission at the SRF. We understand that hand in hand with the research program is our responsibility to raise awareness of scleroderma in the clinics, research labs and within the biotech community where research progress will result in new treatments.
With June being Scleroderma Awareness Month, we look to our own community of supporters to help us spread the word. Whether it's sharing this newsletter with your friends on Facebook or Twitter, or making a gift to help fund the next stages of critical research, we are deeply grateful for your support. In honor of Scleroderma Awareness Month the Foundation will be providing an awareness bracelet to every individual making a contribution of $25 or more while supplies last. This is our way of saying 'thank you' for helping to make a difference and to help make it easier to increase scleroderma awareness from coast to coast.
There's quite a bit of information in this month's eNewsletter... Grab a cup of your favorite beverage, settle in and enjoy.
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 SRF Announces Research Grants of $1,015,000
The SRF proudly announces more than $1,000,000 in research funding for its 2011-2012 fiscal year. The grants, made possible exclusively from private donations, allow the Foundation to expand its research portfolio and strengthen its mission of funding the highest quality medical research aimed at improving the lives of those impacted by this debilitating illness.
We are excited to fund 14 projects all showing great promise for continued progress and for new discovery that will benefit scleroderma patients. The Foundation is grateful to our supporters who allow us to continue our investment in basic science, clinical Scleroderma Centers of Excellence and other projects vital to the scleroderma community. Read more...
For more detailed information on the 2011-2012 grant recipients, please visit the SRF Website here.
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Help Find a Cure and Win a Trip to New York!
 We've just made becoming a Cure Crew member a lot more exciting! If you have a plan to help raise funds and awareness to support research (and even if you don't), now's the time to take action and the SRF will reward you for your efforts!
The Cure Crew member who raises the most money for scleroderma research by September 30, 2011 will win a fun-filled trip to New York City to be a part of the November 2011 Cool Comedy - Hot Cuisine fundraiser (check out pics from last year's event). The grand prize includes two VIP tickets to the event along with airfare and two nights' hotel accommodations. And if that's not enough... We'll also make sure everyone knows you are the top dog when it comes to raising funds and spreading the word about scleroderma, by announcing your success via our website, Facebook and newsletter. We'll also provide you with a shiny trophy that you can show off to your friends and family!
Your Cure Crew page on the SRF website makes it easy to share your story and promote your activity. Take a look at Crew Members Robert Miller or Miina Tupala's pages as inspiration. Robert recently turned his love of music into a fun event for his fans and honored a dear friend living with this devastating illness, and Miina is turning her passion for running into dollars for research!
Click here to learn more about the program and how to join Cure Crew today. Also, take a look at the rules that apply to our contest (our lawyers made us say that). Whether you decide to run an existing race, host a walk or dinner, conduct a yard sale or just create an online profile to ask friends, family and colleagues to support your efforts by making a contribution, we're grateful for your commitment to a cure.
Have questions? Let us help. Call the Foundation at 800-441-CURE between the hours of 9 AM and 5 PM Pacific Time. We have a trophy waiting with your name on it!
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The Promise and Payoff of Rare Diseases Research
Francis S. Collins, M.D., Ph.D., Director of the National Institutes of Health, led the successful effort to complete the Human Genome Project, a complex multidisciplinary scientific enterprise to map and sequence human DNA. He spoke recently with NIH MedlinePlus magazine about the increasing promise of genetics research to the investigation and diagnosis of rare diseases.
Why should we focus on rare diseases when they affect so few people? If you or your family were affected, it wouldn't be rare for you. And the study of rare diseases has taught us more than most people realize. Furthermore, the opportunities to capitalize on what we have learned so far have never been greater. If you care at all about biology and about understanding medicine, rare diseases are critical.
How many rare diseases are there? Altogether, rare diseases affect almost 25 million Americans. Worldwide, there are more than 6,000 that have an impact on people.
How much progress has there been toward understanding rare diseases? The good news is that we have learned a lot about the molecular basis of many of those that are caused by single genes that have gone awry. The bad news is that treatments are available for fewer than 200 of them at the present time.
How much does the mapping of the human genome help? Read more...
Click here to learn more about SRF Scientific Advisory Board Member and Human Genome Project pioneer, David Botstein, PhD.
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Scleroderma Patients at 11-Fold Increased Risk for CAD
Systemic sclerosis (SSc), also known as scleroderma, is an independent risk factor for coronary artery calcium deposition and increases risk by 11-fold, even in patients who lack other risk factors, according to a new study. A research team led by Mo Yin Mok, MD, of the Division of Rheumatology and Clinical Immunology at Queen Mary Hospital at the University of Hong Kong, report in the May issue of Arthritis & Rheumatism that SSc is an independent determinant for coronary artery calcification (along with age and low-density lipoprotein [LDL] cholesterol level), even after adjustment for other cardiovascular risk factors, such as diastolic blood pressure, waist circumference, and body mass index. Read more... Visit our website for more news impacting the scleroderma community. |
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Cool Comedy - Hot Cuisine
 The Foundation celebrated its 26th Cool Comedy-Hot Cuisine on May 4th at San Francisco's Palace Hotel. More than 350 guests were in attendance and enjoyed an unforgettable evening hosted by Bob Saget with appearances by Bill Bellamy, Dana Carvey and special musical guest Counting Crows. The 'Hot Cuisine' was provided by Bravo Top Chef Masters Susan Feniger and Mary Sue Milliken. Thank you to presenting sponsor Actelion Pharmaceuticals and Delta Private Jets for their commitment to a cure. With eight live auction items and a matching grant sponsored by Actelion, the event raised $500,000 for scleroderma research. To see more images from the event visit our Facebook page. |
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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.
Sincerely,
Amy Hewitt
Executive Director
Scleroderma Research Foundation
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