Video Update

For those of you who were not able to attend Above and Beyond:  An Evening of Hope, click HERE to watch a video update on Christiane and the Foundation's progress that we shared at the event.


 A special THANK YOU to Jamey Whitlock of Brake Specialists Plus for sponsoring Hope on the Green Charity Golf Tournament, benefitting the Beyond Batten Disease Foundation.  Over 200 golfers participated and raised over $30,000!  


Show your appreciation by bringing your vehicles to
Brake Specialists Plus for any auto service!

If you would like to hold your own fund-raising event, please visit the Get Involved section of our Web site. 


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Preventing Batten Disease:
Update on the Carrier Screening Test

You may recall that as part of the Foundation's mission to eradicate Batten Disease, we have developed a prevention strategy to create a low-cost carrier screening test for approximately 500 genetic diseases, including Batten Disease.  You can read more about the specifics of the test on our Web site HERE.


We have made significant progress on the test over the past two years.  It was evaluated in over one hundred individuals and showed almost 100% accuracy. A scientific manuscript that describes the test has been submitted to a prestigious scientific journal for publication.  In addition, the world-renowned Max Planck Institute in Berlin has signed on as an official partner and plans to introduce the test to Germany.  We hope to announce several additional international partnerships that we are developing soon, so stay tuned for more exciting news to come! 


The Beyond Batten Disease Foundation and the National Center for Genome Resources are finalizing plans to begin offering the test next year.  After it is launched, it will create sustainability for the Foundation by providing a permanent revenue stream until we find a cure for Batten Disease.

Holiday Cards

 Christiane and her dog, Queenie, ice-skating

Are you searching for a meaningful holiday gift for someone who seems to have everything?  Do you need a present for a teacher or a client?  Would you like to see the money you spend on holiday cards go to a good cause?  We have just what you need!  We have created some holiday cards based upon a charming painting by Christiane Benson (shown above).  The back of each card states "a gift has been made in your name to the Beyond Batten Disease Foundation."  The cards, along with festive green envelopes, are available for a suggested donation of $5 each.  If you would like to place an order, please contact us at [email protected]. 
Events:  Recent and Upcoming
Kelly Willis, Bruce Robison and the Planning Committee
Above and Beyond: An Evening of Hope was held at the Salt Lick Pavilion in Driftwood, Texas, on October 24th and raised over $150,000 for the Foundation!  Many thanks to the volunteers, supporters, and sponsors listed HERE for making it such a success.  Over 500 people came out to enjoy the famous barbecue and a special musical performance by Kelly Willis and Bruce Robison.  We have already begun working on next year's event and will announce the date soon.  
Rare Disease Day:  We are recruiting retailers and restaurants from around the country to donate a portion of their proceeds on February 26, 2011 to the Foundation and we need your help!  Please distribute the enrollment form found HERE while you do your holiday shopping.  After that, your work is done--the Foundation will follow-up directly with the participating retailers.
Run to the Sun, an overnight relay race of approximately 100 miles from Austin to the sunrise destination of Enchanted Rock, will be held on May 14-15, 2011.  We are currently seeking sponsors as well as team captains to recruit and lead teams of up to eight runners.  If you would like more information, please contact us at [email protected]