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A Mother's Story
by Charlotte Benson
I Wish
On Mother's Day, I received a poem from Christiane entitled "I Wish." There was a picture of her at the top blowing on a thistle and written with a black marker in her own handwriting, the last line read, "I wish that there was no more Batten." I swallowed hard knowing that this was one of those difficult moments...
The rest of the story is continued HERE.
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Featured
Fund-raiser
The 4th Annual Battlin' Batten in Baffin fishing tournament raised over $20,000 for BBDF. A sincere thank-you to Neil Meinzer for his efforts in organizing this event.
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Farewell
A fond farewell to Suzanne Kho, Executive Director, who is leaving BBDF to pursue a unique opportunity in Cambodia related to her passion of birding. A search is underway for her replacement and the position description can be viewed HERE. If you or someone you know meets the job requirements and would like to apply, please contact us at info@beyondbatten.org. Bon voyage, Suzanne! We'll miss you.
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Another Successful Run to the Sun Relay |
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On April 28 and 29, more than 200 runners made their way in an overnight team relay run from Enchanted Rock to Mount Bonnell in Austin. The 95-mile event took the participants along a route blooming in wildflowers through the Hill Country, over cattle guards, and finally into Austin as the sun was rising on the 29th. We celebrated on the grounds of Laguna Gloria with a delicious breakfast and musical accompaniment from Austin's Gospel Stars.
For some runners, this was their second time participating in the event (although this year's course was reversed) and for others, it was their first time. For everyone, it was an unforgettable experience. In the words of one runner, "I had an amazing time that I will remember for the rest of my life!" The experience was also captured in blog postings by Kristin Armstrong and Neissa Springmann.
The participants raised over $230,000 to help in the fight against Batten disease. Congratulations to the top-fundraising team, Team Hope, and the lead individual fundraiser, Krista Schuelke. Also, congratulations to the two teams from Casis for winning the Team Spirit Award, Casis for Esme and Casis Young Guns.
Thank you to the runners, sponsors, and volunteers who made it all possible. We've created this special video of this year's Run to the Sun Relay. To watch, please click play on the image below.
(Thank you, Chris Martin!)
Stay tuned for details about Run to the Sun 2013 and more information about how you can get involved as a runner, sponsor, or volunteer.
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New Juvenile Batten Disease Research Fellowship |
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Beyond Batten Disease Foundation has partnered with the American Academy of Neurology (AAN) to create the very first clinical research fellowship in Juvenile Batten disease. As federal funding for Batten disease research declines (there has been a 20% decrease in funding from the National Institutes of Health over the past five years), AAN fellowships play an increasingly important role in developing a pool of clinician researchers. For the recipients, this is the first step towards a competitive career in translational research, which bridges the gap between basic discovery in the laboratory and clinical care and treatment. This two-year fellowship will enable one researcher to conduct studies critically important for the treatment of Batten disease. Funding for this partnership was provided in part by the Will Herndon Fund for Juvenile Batten Disease Research of BBDF.
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Craig Benson Appointed to Interagency Council for Genetic Services |
Governor Rick Perry has appointed Craig Benson, founding director of Beyond Batten Disease Foundation, to the Interagency Council for Genetic Services for a term that runs through September of next year. The Council evaluates the need for human genetic services in Texas and promotes a common statewide database to study human genetic disorders.
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September 15: The 3rd Annual Hope Under the Stars gala benefiting the Will Herndon Fund for Juvenile Batten Disease Research at the Woodlands Resort and Conference Center. More details coming soon to www.willherndon.org.
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