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In This Issue
Webinar Series
Information Overload
Innovation and Entrepreneurship
How Your Kids Might Help You In Ways You Never Imagined
Experts Blaze TRAIL for Pulmonary Arterial Hypertension Therapy
Your Voice Matters!
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

Dear ,

 

The Scleroderma Research Foundation (SRF) held its 2012 Cool Comedy - Hot Cuisine fundraiser on October 22 in New York. To help the Foundation reach our fundraising goal, presenting sponsor Actelion Pharmaceuticals generously offered to match up to $50,000 during a Scleroderma Challenge Grant. Within minutes, the $50,000 challenge was met and SRF Board Chair Luke Evnin along with President Deann Wright announced their willingness to match an additional $25,000.  

 

At the end of the night, more than $664,000 was raised for scleroderma research and the $25,000 Chairman's Challenge was still active for all SRF supporters to double their generosity - whether they attended the event or not.

 

From now until November 12, 2012, double your impact! All gifts to the SRF will be matched until we reach the $25,000 challenge. As an example, for each supporter who gives $50, the SRF will receive $100 to invest in the most promising research aimed at new therapies and, ultimately, a cure.  

 

Please make a gift today and help us raise an additional $50,000 for research taking place at America's most respected institutions.

 

Make your gift today double your impact and help save lives. Donate online now or call 1-800-441-2873 (CURE).

 


The Daily Show's John Oliver, Late Night's Seth Herzong, SRF Board Member Bob Saget, Saturday Night Live's Seth Meyers and The Daily Show's Wyatt Cenac

 

SRF Webinar Series

It's not too late to register for Tuesday's webinar with Dr. Roham Zamanian, Director of the Adult Pulmonary Hypertension Clinical Service at Stanford Hospital and Clinics, as he presents Pulmonary Hypertension as a Complication of Scleroderma: A Guide for Patients and Caregivers. Join us Tuesday, October 30 at 11 AM PDT.


The SRF webinar series is made possible by generous grants from Gilead Sciences and MedImmune.  All previous webinars are available for free download on the SRF website.  
Information Overload
  

When dealing with a chronic illness it can be challenging to make sense of the wave of information available. For many, this is a new territory with its own language, culture and nuances to navigate. It takes time to absorb and understand.

 

Even though patients are the experts about how they feel, think and react to any given medical situation their illness dictates, they are not doctors. Conversely, even though doctors are experts on the treatment of many medical conditions, they are not omnipotent sources of reliable information. What works well for one patient may not work as well for another. Especially with scleroderma, every patient is different. Patients and their medical team can improve discussions, and perhaps treatment success, by better informing themselves. Following are some useful tips to help further understanding:

 

Build your knowledge. By the time treatment starts, patients will likely have searched the web and read brochures on their disease. As such, many overlook asking their medical team which sites have reliable and up-to-date information to avoid old and possibly discouraging information on treatment outcomes.

 

While blogs and support forums help give a real world view of the range of experiences, each patient's story is different and too much thinking about what happens to others, good or bad, increases worry further. Consider using these in moderation.

 

To save time, set up Google Reader to automatically search news sites, blogs and forums.Use the search function (general terms like morphea, scleroderma or systemic sclerosis) to narrow down articles of interest. Read more... 

 

Innovation and Entrepreneurship, from Existing Data

A successful culture of innovation depends as much on enabling entrepreneurship as on the ideas themselves, according to California Council on Science and Technology Council Member Atul Butte, who spoke at the October Council meeting.

 

Butte, MD, PhD, an associate professor and chief of systems medicine in the Department of Pediatrics at Stanford University, runs a laboratory which focuses on mining data that is already available, rather than conducting research in the traditional sense.

 

"The long-term research goal of the Butte Lab is to solve problems relevant to genomic medicine by developing new methodologies in translational bioinformatics," said Butte. "Basically we are working to effectively transform information gained from the past fifty years of biomedical research into knowledge that can improve the state of human health and disease. Enormous amounts of biomedical data are piling up in databases which are themselves increasing in number." Read more...  

How Your Kids Might Help You In Ways You Never Imagined
 

If you broke your arm when you were 6, you were probably back playing on the monkey bar within a few months. But if you break your hip at the age of 80, you're unlikely to ever regain full mobility.

 

The ease with which the human body repairs injured tissue may, in part, be down to its reserve of fetal stem cells. These cells have the ability to quickly migrate to damaged regions and regenerate lost tissues. However, our reserve of these cells decreases with age and their propensity to participate in repair declines significantly. But what if we could use a fetal cell transfusion to aid in repair of injured tissue? Better still, what if we could use fetal cells to cure pathologies such as autoimmune conditions and heart failure? Read more...

Click here for more resources for patients and caregivers. 

Experts Blaze TRAIL for Pulmonary Arterial Hypertension Therapy

Researchers have shown that the cell signaling molecule TRAIL  (aka, tumor necrosis factor-related apoptosis-inducing ligand) may be a potential therapeutic target for pulmonary arterial hypertension (PAH).

 

Allan Lawrie (University of Sheffield, UK) and team report in the Journal of Experimental Medicine that TRAIL proved a potent stimulus for pulmonary vascular remodeling in human cells and rodent models. Moreover, antibody blockade or genetic deletion of TRAIL arrested the development of PAH in three rodent models.

 

Lawrie commented in a press statement: "This research opens up a new insight into the mechanisms of PAH and suggests that TRAIL is critical to this process. If we can interrupt this process by blocking the TRAIL pathway, we have the potential to stop the disease in its tracks and even reverse the damage already done."

 

A previous study by Lawrie and his tream demonstrated TRAIL immunoreactivity within pulmonary vascular lesions in patients with idiopathic PAH, and in animal models. Read more... 

Speak Up! Your Voice Matters.

Raising awareness and sharing our experiences with scleroderma helps to expand our community. Please take a moment to answer our single question survey to share with us who has made your journey easier. 

 

Last month: We asked what is the ONE THING that you wish more people understood about this disease. Answers were once again heartfelt and insightful, selected responses from September's question:

 

What is the ONE THING that you wish more people understood about this disease?

  • Even though I "look so good" on the outside, all of my organs are damaged on the inside.  
  • Until the medical community listens, it is possible that research which could shed light on certain forms of the disease, will be hampered.
  • For those who have scleroderma, I would say that it is not a death sentence. For those who do not have scleroderma, I would say....walk a mile in my shoes. Don't judge what you don't understand. Never say, "I understand." you don't. Instead, be a good listener and a shoulder to cry on, if necessary.   
  • I'm sick - not lazy!
  • I am very grateful for the people who understand, who have stayed by my side and included me in their lives even though my participation might be limited.   

This month's poll: Thanking the caregivers. Tell us about those who make facing the challenges of scleroderma bearable? Click here to provide your answer.

Make a Donation 1-800-441-CURE (2873)