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A Mother's Story
by Charlotte Benson  
  
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The Rainbow 
  

This summer, I spent some time hiking alone early in the morning while our family was on vacation visiting a tropical island. It rained briefly almost every day and the weather changed quickly.

 

One morning, I climbed a ridge with a path of rocks that led me almost straight up like a staircase...

 
 
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Fund-Raiser

  The Run to the Sun was a huge success! We raised over $230,000 and participants called it an "incredible," "amazing" and "memorable" experience. To give you an idea of what it was like, the video below was our thank-you to the runners, donors, sponsors and volunteers who made it all possible (click the photo to play):  
  
R2S Team Photo
  
 We hope that you will consider joining us for next year's run

 

May 5-6, 2012

 

Registration information available soon. 
 

Bon Voyage
 

The BBDF bids a fond farewell to Cori Cuellar, administrative assistant, who joined the staff in early 2009. Cori won a full scholarship to complete her undergraduate degree at Texas State University. Congratulations, Cori! We will miss you and wish you all the best.

  


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Path to Progress 

This has been a busy summer at the Beyond Batten Disease Foundation (BBDF) and we would like to highlight some of our recent accomplishments:

 

Suzanne Kho, BBDF executive director, traveled to London to meet with representatives from Batten Disease organizations from seven other countries. At the meeting, the attendees voted to create the Batten Disease International Alliance to share information between member organizations. We are now working to formalize the structure of the alliance and have begun educating each other about our services and/or our research initiatives.   This will help prevent duplication of effort and maximize our efficiency.

  

BDIA Meeting
The Batten Disease International Alliance

 

The New York Consortium on Membrane Protein Structure (NYCOMPS) is analyzing the structure of the CLN3 protein.  Dysfunction of this protein results in Juvenile Batten Disease, but little is understood about its actual structure.  Not only will this information elucidate the protein's function, but it is critical for drug design.  The BBDF, along with our colleagues at NCL-Stiftung in Germany, nominated the CLN3 protein for evaluation.  NYCOMPS was formed in 2005 under The Protein Structure Initiative of the National Institute of General Medical Sciences. 

 

We awarded a new grant to Dr. Jonathan Cooper at King's College London for his research project, Finding New Targets for Therapy: The Brain's Forgotten Cells in Juvenile Batten Disease. Dr. Cooper and his team will look at how sick glial cells affect the function and survival of nerve cells. This information is particularly important because it may open up new therapeutic avenues using drugs to specifically treat these glial cells. Funding for the project was provided by the Will Herndon Fund for Juvenile Batten Disease Research of the BBDF.

 

Dr. Danielle Kerkovich, principal scientist, and Amy Drew, a volunteer science writer, published a paper in the journal Cerebrum in follow-up to the Drug Discovery in Juvenile Batten Disease conference that we sponsored in February. Their paper, Designing a Plan for Drug Discovery in Rare Pediatric Neurodegenerative Disease, argues that to overcome the gap between basic research and clinical treatment development, researchers in academia and the pharmaceutical industry, supported by government agencies and nonprofits like the BBDF, must come together to share expertise and promote translational research. The full text of the article can be read HERE.   

 

 

Upcoming Events  

September 1 - AustinBrake Specialists Plus 3rd Annual Charity Golf Tournament benefitting the BBDF at Grey Rock Golf Club. Individual and team registrations, as well as sponsorship opportunities, are still available. Please click HERE for more information.  

September 18 - The Woodlands:  Altus Culinary Partners are hosting an evening of celebration for the Will Herndon Fund at their new restaurant, Yucatan Taco Stand & Tequila Bar, 24 Waterway Avenue. This private event will be held from 4:00 p.m. to 9:00 p.m. and will feature dinner and drinks and the opportunity to preview this premier new hotspot. Tickets are $35 and will be available at www.willherndon.org.

October 15 - Austin: Photographer Tracy Trahar has graciously offered to donate her sitting fees of $250 per CDB & Kidssession, plus 10% of any related photo orders, to the BBDF. This is the perfect opportunity to have your family's portrait taken in time for holiday cards. The shoot will be held at Laguna Gloria on October 15 at 9:00 a.m., 10:00 a.m., 11:00 a.m. and 12:00 p.m. To sign up for one of these times, or for more information, please contact [email protected]
 

November 12 - The Woodlands: Save the date for the Will Herndon Fund's 3rd Annual Hope Under the Stars at The Woodlands Resort & Conference Center, beginning at 6:00 p.m.  This year's celebration will feature a repeat performance by the popular Bucktown All-Stars so you will not want to miss it! Tickets and sponsorship information coming soon to www.willherndon.org.  

 

BBDF's annual Above and Beyond: An Evening of Hope, previously held at the Salt Lick Pavilion in October, will be in the spring of 2012. Stay tuned for more details.