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In This Issue
Webinar Series
SRF-Funded Scientists Create
Cure Crew Update
Scientists Halt Deadly Organ Tissue Scarring
Two New Drugs Approved for PAH
Cool Comedy - Hot Cuisine Returns to New York
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 
SRF Webinar Series

Join the SRF and Dr. Pankaj (Jay) Pasricha, Director of the Center for Neurogastroenterology at Johns Hopkins School of Medicine for a live webinar, GI Complications and Treatments in Scleroderma, on Thursday, December 12 at 10:00 AM PST. Register here.   

 

This webinar and all others in our series are made possible by generous grants from Gilead Sciences, MedImmune and United Therapeutics. All previous webinars are available for free download on the SRF website.

 

Stay tuned for announcements regarding new sessions. Details and dates are coming soon!
SRF-Funded Scientists Create Technique for High-Speed, Low-Cost Epigenomic Mapping

A new technique developed by researchers at the Stanford University School of Medicine could pave the way to an era of personalized epigenomics.

 

The technique, described in a study published online October 6 in Nature Methods, could quickly yield huge amounts of useful information about which genes are active in particular cells. The technology involved is cheap, fast and easy to use, and all that would be needed from the patient is a blood sample or needle biopsy.

 

As word of the new technique has leaked, dozens of researchers around the world have begun putting it to work in their labs, said Howard Chang, MD, PhD, professor of dermatology at Stanford and a Howard Hughes Medical Institute early-career scientist. Chang shared senior authorship of the study with William Greenleaf, PhD, assistant professor of genetics. The lead author is graduate student Jason Buenrostro. Read more... 
Cure Crew Update  
Cure Crew Members Roberta and Brian Hunter.
  
As we give thanks this week, we want to send a big thank you to Roberta and Brian Hunter of Manville, Rhode Island for stepping up to help raise funds for scleroderma research. Roberta was diagnosed with scleroderma in 2001 and is committed to making a difference for scleroderma patients. Together, she and her husband, Brian, have hosted an annual yard sale with more than $14,000 in proceeds benefitting the SRF and, now, a simple email campaign has raised nearly $7,000 in just four days! Visit their Cure Crew page to give a gift of any amount in their honor and to show your appreciation of their efforts!
  
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Cure Crew Member Megan Kosmach (daughter of Mark and Debbie Kosmach)

  
BET ON A CURE - The five Kosmach siblings lost their mother to scleroderma in 1995. Since then, with a growing number of friends and family members, they have introduced hundreds of people to scleroderma as well as the work of the SRF. Earlier this month, Team Kosmach hosted two casino nights, one in the Chicago area and one just outside of Houston--each a great success!
  
To date and through multiple fun events, the Joan Kosmach Memorial Fund has raised more than $309,000 to support scleroderma research. The SRF is tremendously grateful to the families of Diane, Annette, Mark, Sandy and Joni for all they continue to do to help patients with scleroderma. To make a gift in their honor, please visit the SRF Donations page and include "Joan Kosmach Memorial Fund" in the notes section.

These are just a sampling of the caring people that are raising funds and awareness for scleroderma research, please check out the Cure Crew section of our site to see learn more.
Scientists Halt Deadly Organ Tissue Scarring in its Tracks
UCSF-Led Study Uses Drug to Target Fibrosis of Lungs, Liver and Kidney

UC San Francisco scientists report that they were able to arrest, and even reverse, tissue scarring of the liver, kidneys and lungs in mice. The scarring, also known as fibrosis, is a major factor in nearly half of all deaths in developed countries.

 

"Scarring is a critical component of organ dysfunction in most chronic diseases - kidney failure, liver failure, lung failure, heart failure," said [SRF-funded investigator] Dean Sheppard, MD, UCSF professor of medicine and senior author of the new study. "But there's no effective therapy for tissue scarring that's approved by the FDA [Food and Drug Administration]. Although scarring contributes to the progression of all these diseases, we currently have no way to treat it."  Read more... 

 

For more news from the research front click here.  

Two New Drugs Approved for PAH
 

In October, the U.S. Food and Drug Administration approved Actelion's Opsumit (macitentan), a new drug to treat adults with pulmonary arterial hypertension (PAH), a chronic, progressive and debilitating disease that can lead to the need for lung transplantation, or death.

 

Opsumit's safety and effectiveness were established in a long-term clinical trial where 742 participants were randomly assigned to take Opsumit or placebo. The average treatment duration was about two years. In the study, Opsumit was effective in delaying disease progression, a finding that included a decline in exercise ability, worsening symptoms of PAH or need for additional PAH medication.

 

Also, in October Bayer HealthCare announced the approval of Adempas (riociguat) tablets for use in two forms of pulmonary hypertension: The treatment of adults with persistent/recurrent chronic thromboembolic pulmonary hypertension (CTEPH) (WHO Group 4) after surgical treatment or inoperable CTEPH to improve exercise capacity and WHO functional class; and the treatment of adults with pulmonary arterial hypertension (PAH) (WHO Group 1) to improve exercise capacity, improve WHO functional class and delay clinical worsening.

Cool Comedy - Hot Cuisine Returns to New York

Cool Comedy - Hot Cuisine is the SRF's signature fundraising and awareness-building event. The most recent event was held November 4, 2013 at Carolines on Broadway. It featured host Bob Saget, the cuisine of Top Chef Masters Mary Sue Milliken and Susan Feniger as well as appearances by John Stamos, Jim Gaffigan, The Daily Show's John Oliver, The View's Sherri Shepherd and James Smith. The event raised nearly $600,000 for scleroderma research. The next event is scheduled for spring 2014 in San Francisco.

 

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