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In This Issue
New DNA Project Shows Us
5 Cures For High Medical Bills
Connecting Patients with Their Best Options
Who Am I Now?
Cure Crew Members - Funding a Cure 18 Holes at a Time!
Your Voice Matters!
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

Dear ,

   

As summer comes to a close, some are heading back to school. For others, it's just a seasonal change that brings cooler temperatures and fall colors.
 
This fall, we're pleased to announce two live webinars geared specifically for the patient community and we invite you to join us:
  • September 26, 2012 11:00 AM Pacific Time, Sue S. Gusz, Nurse Practioner, will present Grief to Hope: From Loss to Healing where she will discuss ways to cope with scleroderma and how patients can better manage the emotional stresses of their disease. Register here.   
  • October 30, 2012 11:00 AM Pacific Time, Roham Zamanian, MD, FCCP is a leading team member of the Stanford Pulmonary Hypertension program. He will share his expertise with pulmonary complications of scleroderma. Register here.
New DNA Project Shows Us Living Beyond Our Genes 

In what many scientists say is a revolution in biology, a giant new project is rewriting our understanding not only of what causes diseases or what makes our eyes a certain color, but what makes us human. And it turns out scientists have been looking in the wrong place for a very long time.

 

The bounty of new discoveries, released in a batch of 40 research papers on Wednesday, shows the stretches of DNA that we call genes are only a very small piece of what makes the body work. Much more important is the stuff in between the genes - stuff once dismissed as "junk DNA". It turns out that junk DNA is what is in control, they report in the series of papers in the journals Nature, Science and elsewhere. Read more... 

 

Visit our site to read more of the latest research news. 

5 Cures For High Medical Bills
 

Just as the health-care system prepares for an influx of newly insured patients, some consumers are facing hefty doctor bills that they weren't expecting.

 

As the Wall Street Journal reported this week, the higher costs reflect a bigger trend in medicine. As more hospitals buy up private physician practices, they're often able to charge higher rates than those doctors' offices formerly charged-sometimes more than twice as much for the same procedures.

 

Since insurance plans typically cover a fixed percentage of a doctor's bill, the patients' out-of-pocket costs often go up as the total bill gets higher.


It's an awkward situation that can leave patients at odds with both their doctors and the insurance company. But experts say there are options for sticker-shocked patients besides paying the full bill. Read more... 
Connecting Patients with Their Best Options

By the time a patient gets to The Johns Hopkins Hospital, we are usually their last stop for hope on what has been a long road in search of the right treatment. Not only is the patient suffering from a life-threatening medical condition, but they have likely already exhausted all financial resources. At this point, though, no distance or amount of money matters; what matters is that they are able to receive the treatment they need before it's too late.

As the administer of the Southwest Airlines' Medical Transportation Grant Program at The Johns Hopkins Hospital, I have the rare opportunity to connect patients from across the country with the advanced patient care Johns Hopkins has to offer-and hopefully the light at the end of a very dark tunnel. The free transportation provided by Southwest through this unique program helps alleviate some of that burden, allowing families to make a choice they might not have otherwise. Before they sign up for the Southwest program, they talk with me or one of my colleagues to determine eligibility. Read more...

Click here for more resources for patients and caregivers.
Who Am I Now?: Living with an Autoimmune Disease
  
There are more than 50 million Americans living with an autoimmune disease (a condition in which one's immune system attacks healthy tissue), and 75% are women, according to the American Autoimmune Related Diseases Association. Some of the more than 100 identified autoimmune diseases include myositis, lupus, rheumatoid arthritis, and Crohn's disease.
 
Part of what can make diagnosis and treatment difficult is the wide variety of symptoms and multiple areas of the body that can be affected.

 

Diagnosis can take several years, especially when symptoms are not taken seriously and/or the patient is made to feel by his or her friends or family that the symptoms are all "in one's head," contributing to patients feeling uncertain about their own symptoms and questioning their knowledge about their own bodies. Read more... 

 

Click here to read more news for patients.
Cure Crew Members - Funding a Cure 18 Holes at a Time!

Throughout the summer, our loyal team of Cure Crew golfers took to the links to do their part in raising awareness and funds for scleroderma research. Filling the ranks from beginner to professional LPGA Tour player, golfers turned out to drive, put, chip and even duff their way through 18 holes to help improve the lives of scleroderma patients.

So far this season we are deeply grateful to the following supporters for their efforts:

  • The Dziak family of Fairview Park, Ohio held their 14th Annual For Patricia Scleroderma Scramble and raised $1,300.
  • Joe Peleska and his family in Blair, Nebraska held their tournament to honor his father. This summer marked their 12th year anniversary. They raised more than $4,000. 
  • In their 6th year, the group from Post Falls, Idaho (pictured right) led by golf pro Patti Marquis raised more than $16,000 to honor LPGA professional Bobbi Salmon, Patty Varty and Carlene Eneroth, all scleroderma patients 
  • Our friends at the Cherry Creek Golf Course in Long Island, New York held their tournament to benefit the SRF and honor patients Lorna Verdone and Judy Soltner. They introduced several friends to scleroderma and raised $6,000 to support research efforts.

In addition to those above, this November, Beth Selbe Lasita will hold her annual tournament just outside Austin, Texas at Lake Cliff Country Club to honor her mom, Betty Selbe, who lost her battle to scleroderma in 2009. Together with husband Tony Lasita, family, friends and colleagues this event has raised more than $200,000 to benefit scleroderma patients.
 
Thank you to this very special group for their commitment to the Scleroderma Research Foundation and for helping us to improve the lives of those living with this disease. Click here to learn about how you too can make a difference!   

  

Visit our site to learn how you can lend a hand.  

Speak Up! Your Voice Matters.

Raising awareness of scleroderma is critical to expanding our community. Please take a moment to answer our single question survey to help us understand what is most important to YOU. 

 

Last month: We asked how you cope with scleroderma. We received many helpful and creative answers and share a sampling of them below:

 

How do you cope with scleroderma?

  • Being thankful for every sunrise I experience. I ask myself each day: "What can I do for someone else today?"  Focus on each phase of my disease (CREST, etc.) so that I can do my very best... When I am "better", I share that "good feeling" joyfully with my family.  When I am experiencing pain, I focus on sharing that gently with my family.  
  • Although it may not work for everyone, I have found that massage, acupuncture and meditation help me in dealing with my scleroderma.  
  • Connecting with others that also have scleroderma is an essential part of living with this disease. It provides knowledge and power in living every day...There is nothing quite like the connection you feel when you are surrounded by other people with scleroderma. It is a good feeling to be connected and to not feel alone.  
  •  I live day by day, taking it easy when I can and trusting in faith. I stay very in tune with my body and what is going on and keep a daily journal.  
  • I cope by finding distractions so that my mind is involved in a task and is not focused on the discomfort of the disease. Flower farming is my newest passion.  It keeps me physically active, enjoying the outdoors and appreciating the beauty that is stored in the wondrous seeds.

 

This month's poll: Raising Scleroderma Awareness. What ONE THING do you wish more people understood about scleroderma? Click here to provide your answer.

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