Featured
Fund-Raiser
Natalie Hojel
Thirteen-year-old Natalie Hojel organized a bake sale to benefit the Foundation last June. In preparation for her Bat Mitzvah, Natalie created a community service project in which she baked, wrapped, and sold 250 cake balls at a Westwood swim meet. The sale was hugely successful, and Natalie's cake balls quickly sold out.
The Hojel family moved to the house across the street from the Bensons last February, and Natalie has been touched by the Benson family from the first time they met. She could not believe that Christiane is losing her vision, and was inspired by Christiane's brave and positive attitude. Natalie is hoping to organize a second sale to benefit the Foundation before her Bat Mitzvah in March 2012, helping the BBDF get closer to finding a cure for Batten disease.
The Foundation is truly grateful for Natalie's leadership and sincere generosity.
If you would like to hold your own fund-raising event or activity, please contact us at info@beyondbatten.org to get started.
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A Warm Welcome
The BBDF is pleased to announce that Lora Hollingsworth has joined the staff as development manager. Lora came on board in October after completing her Master's degree at the University of Texas. She previously worked in fund development at Big Brothers Big Sisters of Santa Cruz County and the Monterey Museum of Art.
Welcome, Lora!
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We are thrilled to announce that KEITH URBAN will headline the BBDF's gala to celebrate our extraordinary accomplishments toward eradicating hundreds of devastating orphan diseases and accelerating research toward treatments and a cure for Batten disease. One of country music's most celebrated artists, Keith Urban has won Grammy Awards and Australia's coveted Aria Award, as well as honors from the Country Music Association and the Academy of Country Music. He is renowned for his electrifying and memorable live performances.
Date Night with Keith Urban will be held at ACL Live at The Moody Theater on Friday, February 10, 2012 at 9:00 p.m. You can buy tickets and sponsorship packages below before they go on sale to the public on November 21st.
Sponsorship packages start at $10,000 and include the once-in-a-lifetime opportunity to meet and have your photograph taken with Keith, guitars signed by him, accommodations at the hip W Hotel next to The Moody Theater, a VIP dinner, an exciting live auction, and more. Click HERE for details.
$500 floor tickets include an invitation to the pre-party with hors d'oeuvres, drinks, and dancing and mingling on the floor of the venue. Purchase ONLINE or download the reply form.
$250 balcony seats offer fabulous views within 75 feet of the stage and include access to a cash bar. Purchase ONLINE or by phone, 877-435-9849.
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We recently finalized a new grant award to a graduate student at the University of Iowa, Mark Shultz, for his research project titled Cellular Phenotypes and Drug Screening for Juvenile Batten Disease. With funding provided by the Will Herndon Fund for Juvenile Batten Disease Research at the Beyond Batten Disease Foundation, Mark will explore the role of the dysfunctional CLN3 protein and develop a screening tool to begin evaluating existing molecules to see if they help repair some of the cells affected by the disease. |
Consider giving the gift of hope this year during the holidays. When you make a donation, we can provide you with cards to give as holiday gifts that state, "a donation has been made in your name to the Beyond Batten Disease Foundation." If you would like to see a sample card, or would like more information, please contact us at info@beyondbatten.org.
Also, visit the Give as You Get Web site for your online shopping needs. Participating retailers include Amazon, Barnes and Noble, the Disney Store, and many more. The BBDF will receive a percentage of the purchases that you make through the Web site at no extra cost to you! Click HERE to start shopping for a great cause now!
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Ongoing - Austin: BKarma, Tuesdays at 11:00 a.m. A donation-based Vinyasa Yoga Class at BFree Yoga, benefiting the BBDF.
January 18 - Houston: Kickoff for this year's Run to the Sun: An Overnight Relay for Batten Disease. Learn more about it with co-chair Lance Thompson at Tiny's No. 5, 3636 Rice Boulevard, at 6:00 p.m.
April 28-29 - Enchanted Rock to Mount Bonnell: Run to the Sun participants will run almost 100 miles through the night to show their dedication and passion for finding a cure. Click HERE to start a team today!
May 4 - The Woodlands: The 3rd Annual HOPE on the Green Golf Tournament will take place at the Woodforest Golf Club. Details coming soon to www.willherndon.org. |
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