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In This Issue
SRF Webinar Series
Importance of Clinical Trials
It's Easier Than You Think to Help Find a Cure
Bench-to-Beside Research

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Insights eNewsletter


Dear ,


I hope you enjoyed the Labor Day Weekend and the shortened week that has followed.  


It has been a busy summer for the SRF... The summer season brought the wrap up of our fiscal year and preparations for our Research Is the Key Annual Report. Keep an eye out for it in your mailbox and on our website in the coming months!


With fall approaching, we're checking in on progress to date on SRF-funded scleroderma research and gearing up for our New York Cool Comedy - Hot Cuisine event. We are excited to be back at Carolines on Broadway, Monday, November 7, 2011. Visit our site for more information.


We're finalizing details for the upcoming SRF Webinar series. As research advances, the Webinars will provide new information about scleroderma, the work of the SRF and how to improve patient quality of life. Knowledge is power and research is the key. Please join us for our first Webinar on October 20, 2011, and read below for more details.


Wishing you the very best...
Join SRF's Live Webinar - Thursday, October 20, 2011

The SRF Webinar Series is a free service to help patients, physicians, family members, friends and others in the scleroderma community to better understand this complex disease. Our 2011-2012 Webinars will feature guest speakers ranging from experts in the research community to leading physicians who treat scleroderma patients. Webinars will be broadcast live and also recorded for later viewing on the SRF website.

Each SRF Webinar will last approximately one hour. A question and answer session will be available via chat functionality at the conclusion of each presentation. Webinars are free for all participants but require online registration, Internet access and a telephone (for audio). A toll-free number will be provided for U.S. and Canadian attendees.


Our first Webinar will take place on Thursday, October 20, 2011 at 9:00 AM Pacific Time. Our featured speaker will be James R. Seibold, MD. "Progress and Promise in Scleroderma Clinical Research" will focus on clinical trials and the vital role they play in advancing research to improved therapies and a cure. Click here to register now.  

The Importance of Clinical Trials 


Since its launch in 2000, Clinicaltrials.gov has grown in a breathtaking fashion. This free online database, created in response to a legislative mandate to help the public learn more about clinical trials, today contains descriptions, locations and other vital information about more than 109,000 clinical trials.


Despite this great progress, many difficulties remain - difficulties that can delay or even thwart efforts to move scientific discoveries from the lab to the medical clinic. One of the biggest challenges is that very few Americans with common diseases are currently enrolled in clinical trials. For example, clinical trial participation stands at just 3 percent among U.S. adults with cancer. Read more...  


Visit our site  to read more about clinical trials and how you can participate.  

Cure Crew: It's Easier Than You Think to Help Find a Cure!


Many people think it's necessary to host a special event in order to help. In truth, simply doing something you love and would be doing anyway can mean big money for research and increased awareness for scleroderma.  


SRF staff member Maria Tupala, an avid runner, decided to test out this theory. As a new mom, she doesn't have a lot of spare time but keeps up on her joy of running by participating in local races.


Maria joined Cure Crew, created a personal page and sent an email to friends and family asking them to check out the link to her page and support her by making an online donation in her honor as she runs in an upcoming half-marathon. So far, she has raised more than $2,000 and shared news about scleroderma with dozens of people - just by asking for support. Each contributor will receive a charitable donation receipt that could come in handy at tax time! It's a winning opportunity for everyone. Here's a link to Maria's Cure Crew page to find out more.


Do you have a race--or maybe a marathon of the couch potato variety--in your future? You can turn either of them into a great fundraising and awareness page on the Cure Crew website. Next, all you have to do is ask friends to support your efforts to find a cure. The only challenging part might be completing your personal 'marathon' of watching 10 hours of Jersey Shore!


Make your next activity a virtual fundraiser just by speading the word that you're doing it for scleroderma and asking for others to help out by attending or making a contribution in your honor!


CCHC Cure Crew ContestNEWS FLASH: The Cure Crew member who raises the most money for scleroderma research by October 15, 2011 will win a fun-filled trip to New York City to be a part of the November7, 2011 Cool Comedy - Hot Cuisine fundraiser. Join the Crew and celebrate your success with a trip to the Big Apple this fall! Click here for more details! 



Changes to the NIH CTSA program may bring more support to bench-to-bedside research


"Translational research" has become the new buzzword in science. Increasingly, an important goal of research is a "bench-to-bedside" approach that rapidly progresses from fundamental laboratory studies to patient treatment. Translational science is gaining increasing prominence within the National Institutes of Health (NIH) as well. Since 2006, the NIH has funded translational research centers throughout the United States--the Clinical and Translational Science Awards (CTSA) program--and the scientific work done through these centers may soon assume new importance.


NIH Spotlight on Translational Research Grows - As part of a planned reorganization, the National Center for Research Resources-where the CTSA as well as well as other research programs are now housed-will be disbanded and a new center dedicated to translational research will be formed. Proposed by NIH Director Francis Collins, MD, PhD, the new National Center for Advancing Translational Sciences (NCATS) will be aimed at strengthening translational research within the United States. Read more...    


Follow this link to read more news for patients.  

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)