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In This Issue
Webinar Series
Who's At Risk For Catching The Flu?
Scientists Uncover How Immune Cells Sense
Legacy Society Member Spotlight
Research and the "Fiscal Cliff"
Your Voice Matters!
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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 

Dear ,

 

On behalf of all of us at the Scleroderma Research Foundation, thank you for making it a remarkable year for medical research. We are grateful for your kindness and recognize the vital role you play in our continuing success.

To see what projects you helped to fund last year, including two new exciting projects at UC San Francisco, visit our Website to download our 2012 Year-End Report. 

SRF Webinar Series - Join Us This Friday!
 
It's not too late to register for this week's webinar featuring Dr. Andrew Tager who will present: "New Directions for Scleroderma Treatments: Understanding the Basis for Current Clinical Trials". Dr. Tager will guide attendees to a better understanding of the clinical trial process for scleroderma patients.

The webinar will take place this Friday, December 14, 2012 at 11:00 AM Pacific Time. Click here to register now.   

 

The SRF webinar series is made possible by generous grants from Novartis, Gilead Sciences and MedImmune. All previous webinars are available for free download on the SRF website.  
Who's At Risk For Catching The Flu?

According to Flu.gov, a federal government website managed by the U.S. Department of Health & Human Services, people with weakened immune systems are at high risk for flu complications if they get sick. Some types of arthritis and certain arthritis medications can weaken your immune system, putting you at greater risk of getting seriously sick if you get the flu.

Learn more about why having arthritis and other related conditions may put you at higher risk for getting the flu by visiting the Arthritis & the Flu section of Flu.gov. 

Visit our site for more patient related news.  
NIH Scientists Uncover How Immune Cells Sense Who They Are
Clinical Trial Microscope
Scientists at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the National Institutes of Health, have demonstrated that DNA previously thought to be "junk" plays a critical role in immune system response. The team's findings were published in Cell and may lead to the identification of new therapeutic targets for the treatment of immune-related disorders. Read more... 

 

Click here to read more research news.
SRF Legacy Society Member Spotlight
 
Clinton "Clint" Ternstrom

Clint was born in Seattle on August 26, 1917--just four months after the U.S. entered World War I. At the age of three his family relocated to the Los Angeles area where he was raised, built a life, married his wife Marion and raised a family.

 

In 1934, during hard the times of the Depression, Clint was awarded a partial scholarship to USC. He majored in architecture, a career he loved and later used his skills to build a home for his wife and children. While at USC, treatments for a serious illness left him without funds to continue his education. Generous and unexpected support from USC's finance department made an 'arrangement' that allowed him to remain in school. Clint was profoundly influenced by this act of kindness and vowed to help others financially if ever possible. In his later years, he helped establish USC's Architectural Guild and several endowments that have provided valuable funding for many students at his beloved School of Architecture. 

 

In addition to a successful architectural career, Clint was honored to serve as a commissioner on the Board of Urban Planning in Southern California for several years. He also traveled abroad many times to Southeast Asia, volunteering his time and talents through the non-profit International Executive Service Corps (IESC). In his 'golden years', Clint enjoyed volunteering at the Getty Museum.

Marion, Clint's wife of 56 years was diagnosed with scleroderma and battled the disease for nearly 23 years before ultimately succumbing to complications. To honor her courageous struggle as well continue his vow to philanthropy, Clint set up the Marion Ternstrom Scleroderma Endowment at the Scleroderma Research Foundation. He continued to add to the fund for nearly 10 years and established an estate plan to ensure life-saving research would continue in Marion's memory long after his own passing.

 

Clint passed away from natural causes on August 15, 2012, just two weeks prior to his 95th birthday. He is survived by his son Tim, daughter Margo, and son-in-law Art Watanabe.

 

The SRF is deeply grateful to Clinton Ternstrom for his commitment to improving the lives of scleroderma patients.

 

If you would like to learn more about the SRF Legacy Society please visit our site or contact Amy Hewitt at 800.441.CURE. 

Medical Research and the "Fiscal Cliff"
 

With much discussion over "Sequestration" also known as the "Fiscal Cliff", the SRF shares an article from Science published online from summer 2012. The article provides some very simple facts about cuts to U.S. science budgets, and more specifically the National Institutes of Health, the largest funder of scleroderma related research. Sequestration will take effect if Congress does not  reach an agreement by January 2, 2013. To learn more, read the Science article here.   

Speak Up! Your Voice Matters.

Let's see what you know! Please answer our short four question December Quiz and also help us to make the 2013 eNewsletter even more helpful by taking our six question survey.

  

Last month: We asked for caregiver stories to share with the scleroderma community. Answers were once again heartfelt and insightful, selected responses from last month's question:

 

Tell us about those who make facing the challenges of scleroderma bearable:

  • My best friend really listens to me and encourages me to rest in the face of mounting responsibilities.

  • The best caregiver is one that sees that you need help before you even realize it yourself...that is my husband. He sees when my hands are blue before I do. He gets the blankets, turns on the fireplace and gets me warmed up. He makes sure the bed will be warm when I get in it. He watches me, he notices the details. He loves me. What a blessing he is to my life.

  • I thank my alternative practitioners for their listening skills, their expertise and their compassion. My lifestyle would be much more compromised without my alternative practitioners.

  • My husband is my caregiver. In the beginning my scleroderma was very bad. He and I were only together one and a half years and we were not married. It took a while for me to be diagnosed and I ended up in the hospital for a week because of severe Raynaud's phenomenon. The doctors said I really needed to move somewhere warm. He stayed with me and decided to move to FL. We were married a year later and he has been there every step of the way. During finger amputations, stomach issues, breathing issues and most recently breast cancer. It has been an emotional 12 years. Although I try to do things myself, I need help with everyday things such as dressing, meds and so forth. The biggest help my husband has been for me is emotionally. He compliments me and makes me laugh when I don't feel like it. He massages me when I hurt. I know it may sound trivial but your brain is a big factor in any healing process and to know someone will always be there for you is a very effective motivator.

This month: Take our scleroderma QUIZ and short survey to make Insights eNewsletter a more valuable tool for you in the New Year. Tell us what you know and what we can do better. Click here to take the quiz and provide your answers.

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