THANK YOU to Katie Myers for organizing a kickball tournament to raise funds and awareness for BBDF!  Katie met Christiane while working at Casis Elementary School in Austin and recruited her friends and family--many of whom came all the way from San Antonio-- to support the Foundation through this fun event.  
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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 to Support the Scientific Meeting


Batten Disease Scientific Meeting
The Beyond Batten Disease Foundation (BBDF) is pleased to announce that it is sponsoring a scientific meeting focused on drug development for juvenile Batten Disease.  We are partnering with the Alzheimer's Drug Discovery Foundation, which has organized the 5th Drug Discovery Conference on Neurodegeneration: an Intensive Course on Translating Research into Drugs.  
One of the greatest ongoing challenges in medical research is taking scientific findings from laboratories, "translating" them into clinical trials and, ultimately, into treatments for patients in a timely fashion.  Attendees of this conference will learn how to do exactly that by training in a technique called high throughput screening, which will enable them to design their research with the ultimate goal of developing treatments, and to test existing drugs for their potential to help children with Batten Disease.
The BBDF will provide support for approximately 20 Batten Disease researchers to attend the conference.  In addition, we are planning a full-day session immediately following the main conference to focus exclusively on Batten Disease.  Leading experts in medicinal chemistry and drug development from the U.S., Canada and Europe are scheduled to participate. The meeting will be held February 6-9, 2011 in San Diego.  
The NCL-Stiftung, based in Germany, will join us in co-sponsoring the meeting.  In addition, we would like to extend a special thank-you to the Luke and Rachel Batten Foundation for providing a grant to the BBDF to cover a portion of the meeting's costs.
Batten Disease Research: 
Hope on the Horizon
Although there are many questions and unknowns about Batten Disease, there has been progress in recent years, which gives us hope.  Juvenile Batten Disease is an inherited neurodegenerative disease that belongs to a family of diseases called lysosomal storage disorders.  Affected children are born with mutations in their CLN3 genes, one from each parent.  Because of this mutation, the children's cells do not produce normal CLN3 protein, which results in the inability of the cell to digest and dispose of its own waste material.  
The hopeful news is that there is a research target: the CLN3 protein, which gives us something to replace or bypass. Unlike other neurodegenerative disorders where the primary target is unknown, such as most forms of Alzheimer's disease, we know the reason for Batten Disease. We know kids develop it because they don't have CLN3 genes capable of making normal CLN3 protein. The other good news is that we know everything is working up to a point. For a number of years, a child with Batten Disease is healthy, so if something could tilt the balance back to maintain cell function, it might delay the onset of or slow the disease.
The BBDF, under the direction of scientific consultant Dr. Danielle Kerkovich, is attacking the problem from multiple angles.  In addition to our grant to Texas Children's Hospital, we are funding the development of a monoclonal antibody of juvenile Batten Disease.  We will make this antibody available to researchers as a tool that they can use to determine the precise function and location of the CLN3 protein.  The scientific meeting that we are sponsoring also will provide training in ways to create drug therapies that modify missing or altered protein function.  These are important steps in getting treatments into the pipeline to help children like Christiane and Will.
Upcoming Events
The Beyond Batten Disease Foundation and many volunteers are hard at work planning the following fund-raising events: 
September 16:  The 2nd Annual Brake Specialists Plus Charity Golf Tournament, Hope on the Green, benefitting the Beyond Batten Disease Foundation at the Grey Rock Golf Club in Austin, TX.  There is still space for a few more players!
October 24:  Above and Beyond: An Evening of Hope at the famous Salt Lick Barbecue Restaurant in Driftwood, TX,  with special musical guests Bruce Robison and Kelly Willis.  Table sponsorships and tickets are available. 
November 5:  Hope Under the Stars in The Woodlands, TX, benefitting the Will Herndon Fund of the BBDF.  This year's event features the Bucktown All-Stars, a popular R&B band from Louisiana. 
May 14-15, 2011:  The Run to the Sun, an overnight relay race of approximately 100 miles from Austin to Enchanted Rock.  We are currently seeking team captains to recruit and lead teams of up to eight runners. 
For more information on any of these events, please contact us at 1-877-6BATTEN or info@beyondbatten.org.  We hope to see you there!