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In This Issue
Webinar Series
What is an ANA (Antinuclear Antibody)?
Food and Drug Interactions Quiz
How Will 2013 Taxes Affect You?
Your Voice Matters!
Rare Disease Day
Quick Links

The SRF is Hiring!

Would you like to be part of the team at the SRF and make a difference in the lives of scleroderma patients everywhere? The SRF is looking for a qualified candidate to fill the position of Director of Development

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Insights eNewsletter

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All of us at the Scleroderma Research Foundation wish you a happy Valentine's Day. We've also created a special way to help you send a little love to the special people in your life. With a minimum donation of $20 by February 12, we'll print and mail a special Valentine's Day card with your personal message to the recipient(s) of your choice. Send a Valentine (or two) and help improve the lives of patients everywhere!  



Just (1) click the link below to make an online donation; (2) check the "in honor" box in the tribute section; (3) fill out the name and contact information for where you'd like us to send your Valentine, and (4) write your personal note in the comments field at the bottom (we'll know it's for Valentine's Day).


If you want to give more than $20, great! In fact, we'll show a little love to the individual who makes the largest Valentine's Day gift. You'll receive a special Valentine Surprise in appreciation of your generous support. Send your Valentine today by clicking here.  

SRF Webinar Series
In case you have missed one of our previous sessions, take a look at our entire library here. Our popular series has provided information for patients and those who love and care for them. Here is a sampling of sessions that are available:

Scleroderma: A Complex Vascular Disease presented by Dr. Fredrick Wigley, Director of the Johns Hopkins Scleroderma Center 
The SRF webinar series is made possible by generous grants from Novartis, Gilead Sciences and MedImmune. New dates will be announced on the SRF website soon, stay tuned.
What is an ANA (Antinuclear Antibody)?

Have you ever wanted to know what an ANA is or what a positive ANA result means? The American College of Rheumatology has helped to answer these questions and more.

The immune system makes an abundance of proteins called antibodies. Antibodies are made by white blood cells and they recognize and combat infectious organisms in the body. Sometimes these antibodies make a mistake, identifying normal, naturally-occurring proteins in our bodies as being "foreign" and dangerous. The antibodies that target "normal" proteins within the nucleus of a cell are called antinuclear antibodies (ANA). ANAs could signal the body to begin attacking itself which can lead to autoimmune diseases, including lupus, scleroderma, Sjögren's syndrome, polymyositis/ dermatomyositis, mixed connective tissue disease, drug-induced lupus, and autoimmune hepatitis. Read more...
Food and Drug Interactions Quiz

What do you know about the risk of mixing certain foods and drinks with medications? For example do you know which fruits and vegetables to avoid when taking an ACE inhibitor and more importantly, why? Take the quiz and read more here.

To learn more about food and drug interactions watch the segment provided by CBS Today.

Visit our site for more patient related news.  
How Will 2013 Taxes Affect You? 

The new tax landscape looks very different than it did in 2012. How will the tax law changes affect your situation? Here is a brief summary covering some of what you can expect.

IRA charitable rollover: Donors aged 70½ or older are once again eligible to move up to $100,000 from their IRAs directly to qualified charities without having to pay income taxes on the money. Known as the IRA charitable rollover, this law has been extended to the end of 2013 and made retroactive for 2012. Your gift will qualify under this law if:
  • You made a gift of up to $100,000 from your IRA directly to a qualified charity in 2012.
  • You made a gift before Feb. 1, 2013 - you may choose for this to qualify as a 2012 or 2013 gift. (If you took a distribution from your IRA in December 2012 and then made a gift prior to Feb. 1, 2013, the law allows you to treat it as a direct transfer.)
  • You make your qualified charitable distribution by Dec. 31, 2013 - this will qualify as a 2013 gift.  Read more... 
Click here to learn more from the planned giving section of our site.
FDA New Drug Approvals Hit 16-Year High in 2012

U.S. regulators approved 39 new drugs in 2012, the most in 16 years, suggesting that pharmaceutical makers are poised for growth after losing billions of dollars in recent years to generic drug makers because of patent expirations.


There were eight approvals in December alone, including a new treatment from Johnson & Johnson called Sirturo for drug-resistant tuberculosis approved on Monday, the first new TB drug in decades. Read more...  

Speak Up! Your Voice Matters.


Last month: We invited you to take a scleroderma QUIZ and provide your feedback on how we can make Insights eNewsletter an even more valuable resource. Thank you for your participation, feedback and encouraging words. In case you were keeping track, following are the answers to the QUIZ and how our readers responded:


How many clinical trials are ongoing or currently enrolling patients?

  • Answer - More than 50, which 27% of you answered correctly. The encouraging news is that scleroderma clinical trials are growing at a rapid pace and, with more interest from industry, we anticipate this number to continue to grow. Inquire with your primary care physician and/or rheumatologist about ways you could become involved or visit the clinical trials section of our site to learn how to search for trials that might be right for you.

 What percentage of scleroderma patients are female with disease onset between the ages of 30 and 60?

  • Answer - 80%, which received 45% of your responses. A startlingly statistic for sure and one researchers focus on to understand the role that gender plays in scleroderma.

 How much funding is projected for scleroderma research for FY2013?

  • Answer - $25 million, no doubt encouraging to the majority of respondents who selected $10 million or less. Since 2008, there has been a 20% increase in funding from National Institutes of Health, however scleroderma funding levels are not on par when compared to other diseases with similar incidence rate and cost to society.

 Tell us what used to be the most lethal scleroderma complication and what it is today.

  • Answer - It used to be that renal crisis (kidney failure) was the most lethal complication of scleroderma; however, with the introduction of ACE inhibitors, today, Pulmonary Arterial Hypertension (PAH) is considered to be scleroderma's most life-threatening complication. The encouraging news: the pharmaceutical industry is rising to meet the need with drugs that increase the blood supply to the lungs and decrease workload on the heart.

This month: February 28, 2013 is Rare Disease Day. An international day that brings awareness to the challenges faced by those living with a rare disease, it also highlights the hope that the future holds for those afflicted. Click on this month's survey to tell us what you consider the greatest challenge posed by scleroderma and what keeps you optimistic about the future of research. We'll share some of your answers next month.


Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  


In the U.S., any disease affecting fewer than 200,000 people is considered rare as defined by the Orphan Drug Act of 1983. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.  


Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. The efforts of Rare Disease Day brings worldwide awareness of the common challenges and experiences faced by rare disease patients and their families.  

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