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In This Issue
SRF Webinar Series
Win a Trip to New York
Appealing An Insurer's Denial
Are We Ready for 'Personalized Medicine' in Scleroderma?
Getting More Drugs Approved for Rare Diseases
NIAMS 25th Anniversary

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Insights eNewsletter


Dear ,


Summer is in full swing and the SRF has much to share this month. Pour yourself a refreshing glass of lemonade and enjoy...


In this issue: Announcement of a new SRF hosted Webinar series (and an opportunity for you to share which topics will be of the greatest intrest to you), a Cure Crew update along with a way for you to win a trip to New York for our November Cool Comedy - Hot Cuisine fundraiser and featured news articles from around the scleroderma community.


Thank you to everyone who made a contribution last month in honor of Scleroderma Awareness month. I hope that you're enjoying your new blue awareness bracelet! Your gift is already being put to work to fund the most promising scleroderma research. If you missed out and still want an awareness bracelet, call the Foundation M-F at 800-441-CURE between 9 AM and 5 PM PST, make a donation of $25 or more and say - "Please, send me a bracelet!" We'll ship one out to you that day while supplies last!


Feel free to share this newsletter with friends on Facebook or Twitter by clicking the link(s) at the top of this email. Together we are making a difference in the lives of people living with scleroderma.


Wishing you a joyous summer...

SRF Announces Webinar Series to Benefit Patients

The SRF is excited to announce our fall 2011 webinar series. These free, live webinars will be hosted by leading clinicians, researchers and other experts from the scleroderma community. The new forum will provide a unique opportunity to "Ask the Experts" questions that often go unanswered. Learn more about scleroderma, the Scleroderma Research Foundation, current treatments and what's being done to find improved therapies and a cure. Register this fall to learn more!


Tell us what topics you'd like to see featured by clicking the survey link below (just six questions). Also, if you haven't already, join the SRF mailing list to receive email updates on upcoming webinars.  Take the two minute SRF webinar survey now! 

Cure Crew 


Cure Crew logoCure Crew members are doing their part to raise scleroderma awareness and funds for research. Some volunteers aren't officially signed up for the program but we count them as honorary Cure Crew members nonetheless!


Thank you to Eileen McCaffrey of Cherry Creek Golf Links in Riverhead, New York for organizing a golf tournament that introduced many to scleroderma and raised $6,000 for research. And, to Tim Dziak in Fairview Park, Ohio for hosting the 13th Annual Patricia Dziak Memorial Scleroderma Scramble golf tournament.


Thank you also to Roberta Hunter who held a garage sale in Lincoln, Rhode Island and raised more than $1,400 for research.   


A number of people are using social media tools such as Causes on Facebook, Crowdrise, Twitter and other means to spread the word and raise vital dollars for research. We're tremendously grateful for their support!


If you haven't already, sign up for Cure Crew, our volunteer program that provides the tools necessary to turn your passion into more funds and awareness for scleroderma research. We'll ship your Cure Crew t-shirt out the door today!


CCHC ContestThe 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.


Your Cure Crew page on the SRF website makes it easy to share your story and promote your activity. 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, golf tournament 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.


Have questions? Let us help. Call the Foundation at 800-441-CURE between the hours of 9 AM and 5 PM Pacific Time.

Appealing An Insurer's Denial Is Often A Good Strategy

Nobody wants to get into a fight with a health insurer, but it may be worth your while. A recent Government Accountability Office report found that more claims problems stemmed from annoying but often straightforward billing and eligibility issues than from disagreements over whether care was medically appropriate. What's more, the odds are about 50/50 that if you appeal an insurer's decision, you'll win.   


When Natasha Friedus's son, Nofi, was born almost two years ago, her insurer refused to pay $1,500 of Friedus's $7,500 hospital bill because she hadn't gotten prior authorization for the hospital stay near her home in Seattle. The plan also sent a $600 bill to Nofi, because he'd neglected to inform the insurer that he'd be in the hospital for a few days. "Apparently he was supposed to call before being born," Friedus says. Read more...  


Click here to find additional resources that can benefit patients and caregivers.

The pleomorphism of systemic sclerosis: are we ready for 'personalized medicine' in scleroderma?

While the term 'personalized medicine' is relatively new, with varying definitions depending on whether it is defined by those in Congress, pathology, genetics, informatics or pharmacology, it is not a novel concept. Sir William Osler recognized that "variability is the law of life, and as no two faces are the same, no two bodies are alike and no two individuals react alike and behave alike under the abnormal conditions we know as disease" [1] . Perhaps he based this on his description of scleroderma. Read more...

For more news from the research front click here...
Getting More Drugs Approved for Rare Diseases  


A new paper offers a possible road map for getting more drugs approved to treat rare diseases. One key recommendation: improving access to the FDA's accelerated approval pathway, originally developed to quickly get treatments to patients with life-threatening diseases.


The paper, written by Brigitta Miyamoto and Emil Kakkis of the Kakkis EveryLife Foundation and published today in the Orphanet Journal of Rare Diseases, says the FDA should offer specific guidelines on how companies seeking to develop drugs for rare diseases can better utilize accelerated approval. Read more...  


Visit our website for more news impacting the scleroderma community.

SRF Supports NIAMS 25th Anniversary Symposium


Left to right: SRF Chairman Luke Evnin, PhD; NIAMS Director Stephen Katz, MD, PhD; SRF Board Member Deann Wright and NIAMS Scientist Emeritus Henry Metzger, MD at the NIAMS 25th Anniversary Symposium

It is only through continued collaboration that a cure for scleroderma will be found. To that end, the SRF is proud to support a variety of initiatives that share this vision. One such initiative was the recent National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) 25th Anniversary Scientific Symposium, Improving Lives Through Discovery.   


This conference brought together a wide range of stakeholders−including the scientific community, voluntary and professional organizations, patients and congressional staff to hear about scientific advances made possible with NIAMS support as well as how these advances have improved patient lives. Attendees learned more about the future direction of NIAMS research, which will include delving further into the genomics of inflammation. We are honored to sponsor this milestone event that will ultimately provide a better future for those patients that suffer from scleroderma and other diseases of the bones, joints, muscles and skin.



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)