BBDF HOSTS SCIENTIFIC EXPERTS TO FOCUS ON BATTEN
Partnering with New York Academy of Sciences for innovative conference
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| | Steven U. Walkley, DVM, PhD, Albert Einstein College of Medicine and Shuyan Lu, MS, Pfizer Inc. |
This fall Beyond Batten Disease Foundation and the New York Academy of Sciences brough t together over 70 research leaders from multiple diseases, like Cancer, Parkinson's and Alzheimer's, to collaborate and focus their efforts and expertise on juvenile Batten disease. At the "Drug Targeting the Lysosome Workshop" held at the NYAS Conference Center at 7 World Trade Center, both academic and pharmaceutical researchers discussed how to work together for common aims. Take a moment to listen to the free podcast, even for the non-scientist, it is accessible and educational.
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RUN TO THE SUN COUNTDOWN
Sign up TODAY and spread the word
 The 5th and Final Run to the Sun Relay is less than 2 months away! Sign up TODAY for this unbelievable experience! On the fence? BBDF staff can connect you with past runners who can give you a firsthand account of the event. This is YOUR year!
Not feeling up to the 90 mile relay? Join us for the Fun! Run to the Sun 2K. Whether walking or running, this event is perfect for all ages. There will be special awards for middle school and high school kids who participate, including best costume, most school spirit, and 3-legged race winner.
Following the relay and 2K, there will be a sunrise celebration symbolizing the hope of a world beyond Batten.
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CONGRATULATIONS LANCE THOMPSON
Austin-American Statesman Jefferson Award Winner
 In November, Lance Thompson was awarded the Jefferson Award for Public Service for his dedication to Beyond Batten Disease Foundation. In 1972, Jacqueline Kennedy Onassis, U.S. Senator Robert Taft, Jr., and Sam Beard founded the Jefferson Awards program to honor the unsung heroes of our country. Now known as the "Nobel Prize for volunteerism," the Jefferson Awards honor individuals for their achievements and contributions through public and community service.
Five years ago, Lance had the far-fetched idea for an overnight relay through the Texas hill country. Not only would this event emulate the blindness caused by Batten disease, it would end at sunrise, symbolizing the hope of a future beyond Batten.
To date, the Run to the Sun Relay has raised over $1.3 million. Thank you Lance for your ingenuity and continued support!
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IGNITE FEATURES CHARLOTTE
In The Real Women, Real Stories Series
 Charlotte was highlighted on iGnite's blog feature "Real Women, Real Stories." With the aim of inspiring others with hope and optimism, women tell their stories sharing their perspective and connecting with others.
On March 28, 2008, my husband Craig and I received the devastating news that our daughter, Christiane had been diagnosed with a very rare neurodegenerative disease called Batten Disease. Batten Disease causes blindness, seizures, is physically and mentally incapacitating and is ultimately terminal by the late teens or early 20's. Seven years later, it still takes my breath away to write all of that in one sentence.
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SPOTLIGHT CHARITY AT WOODLANDS MARATHON
The Will Herndon Fund ran for HOPE
The Will Herndon Fund at Beyond Batten Disease Foundation was chosen as the spotlight charity for The Woodlands Marathon. Participants ran in honor of Will in the marathon, half marathon, 5K and 2K, raising over $14,000. In preparation, they hosted The Warrior Run & Rally on January 24th, which was filled with HOPE and excitement for the upcoming race.
Thank you for being Warriors for Will and all children with Batten disease! Laura King Edwards of Taylor's Tale joined the Will Herndon Fund at The Woodlands Marathon on February 28th as part of her quest to run in all 50 states to raise Batten awareness. Read about her journey here.
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