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Watch The New Video We Shared At Date Night With Keith Urban
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Don't miss the end of the video where Dr. Oz discusses our genetic test!
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Run to the Sun
APRIL 28-29, 2012
Planning for our second Run to the Sun Relay is well underway. Over 32 teams have already registered for this overnight, 100-mile relay run. This year, the course will begin at Enchanted Rock in the Texas Hill Country and end at Mount Bonnell in Austin, with a morning celebration at Laguna Gloria on the 29th.
It's not too late to join us!
Contact us at
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Welcome
A warm welcome to Carolyn Frank, who is joining us as a part-time development assistant to work with the Will Herndon Fund of the BBDF. Also, a special thank-you to Caroline Hunt, who is a senior at Westlake High School, for volunteering with us this semester. |
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Date Night With Keith Urban |
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We are just starting to come down from Cloud Nine, after the
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By Meredith Rainey of CultureMap Austin
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overwhelming support we received for our February 10 fund-raising event, Date Night with Keith Urban. The evening was an enormous success, with the live auction alone raising well over $500,000! It was the collective opinion that it was the best live show anyone had ever seen. Attendees included Governor and Mrs. Rick Perry, Lt. Governor and Mrs. David Dewhurst, Attorney General and Mrs. Greg Abbott and country-music star Jack Ingram, who sang a duet with Keith.
We were thrilled by the media coverage that the event received, which helped us spread the word about rare genetic diseases like Batten disease and our work to prevent them in future generations. This included articles by the Austin American-Statesman, CultureMap Austin, Examiner.com, Tribeza, and interviews with KASE 101, Fox News and KVUE. (Click each name to view the article or interview.)
An enormous thank-you to the co-chairs, Sabrina Brown and Shannon Janek, and the entire planning committee for their vision and hard work towards making the event a reality. The committee members included: Kristin Alexander, Lucy Butter, June Chandler, Ashley Crider, Beth Cunningham, Darby Denison, Susanne Denison, Jacy Donovan, Kristin Ernst, Lezlie Glade, Courtney Hill, Diane Humphreys, Lisa Jessup, Julie Lewis, Lisa Magids and Dawn Thompson.
Our sincere gratitude to everyone who made the event possible, our sponsors (listed HERE), donors, volunteers and all the guests. Thank you for giving children with Batten disease the gift of HOPE for the future.
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We are pleased to announce a new grant award to the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital. With funding provided by the Luke and Rachel Batten Foundation, founded by Melinda and Sam Watson in honor of their two children, we awarded a two-year grant of $100,000 to support a dedicated postdoctoral researcher in the laboratory of Dr. Marco Sardiello. With the previous $2.5 million grant from Beyond Batten Disease Foundation and Cherie & Jim Flores, Dr. Sardiello and his team have made remarkable progress in their understanding of how cells function in children with juvenile Batten disease. This new grant award will help expedite the identification of drugs to counteract the disease's progression. If successful, researchers will be poised to move directly into clinical trials.
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| Rare Disease Day is just around the corner--February 29! This day is an opportunity to raise awareness and support for people who are living with rare diseases, which affect as many as one in ten people in the United States.
In Austin, Touch of Sass, located at 5th and Lamar, is hosting Jane Howard from Jane Howard Design to preview her spring collection of jewelry made with hand-selected semi-precious stones, wire trappings and other interesting details. The trunk show will be from 5:00 p.m. to 8:00 p.m. on February 29 and sips and snacks will be served. Bring your girlfriends and join us for a fun evening! 10% of purchases made that day will be donated to the Foundation.
In honor of the day,  which creates exquisite glass votive candle holders, will donate 10% of Website sales to the BBDF when you place an order. glassybaby was founded by a
 three-time cancer survivor who found great hope and healing in the light of a lit, handmade votive. She wanted to spread that hope. To date, glassybaby has donated more than $850,000 from sales to charities dedicated to healing and helping patients with day to day needs during treatment. glassybaby are handmade in 400+ colors by Seattle artists. Visit glassybaby.com and use the code "bbdf" for orders through May 31.
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