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BBDF AWARDS $515,000 GRANT
Foundation partners with New York Stem Cell Foundation 
  

Beyond Batten Disease Foundation (BBDF) partnered with the New York Stem Cell Foundation (NYSCF) to create the largest and most genetically diverse collection of induced pluripotent stem (iPS) cells in juvenile Batten disease. IPS cells are produced by artificially "turning back the clock" of skin cells to a time when they were stem cell-like and capable of becoming any cell in the body. With a pharmaceutical nudge, the embryonic cells will be pushed to become, not the skin cells they once were, but brain cells. In other words, iPS cells will give researchers the first opportunity to watch juvenile Batten disease develop directly in brain cells. Thus far, efforts to study juvenile Batten disease have been done using rodent models or human skin cells; neither of which accurately recapitulate the disease in the brain, leaving researchers without proper tools to study the disease or a solid platform for testing drugs that will prevent, halt, or reverse its progression.

 

At the Batten Disease Support and Research Association (BDSRA) Family Conference on July 24-27, 2014, BBDF began the process by collecting skin biopsies from affected children and their parents.

 
MIGHTY LIKE A ROSE CD BENEFITS BBDF 
Downloads now available on CD Baby, iTunes & Amazon

Moved by the Benson's story and the foundation's work, John Edson wanted to help spread awareness.Turning to what he knows best, music, John gathered some of Austin's finest musicians to record his family's favorite lullaby,"Mighty Like A Rose." Now available for download on CD Baby, iTunes, and Amazon, all sale proceeds benefit BBDF and our efforts to find a cure. 

Preview Vocal Version
Download
Preview Instrumental Version

 

Celebrated for her raise-the-roof voice and rambunctious keyboard stylings, Asleep at the Wheel's Emily Gimble shows her tender side in this reworking of the 1901 lullaby by Nevin and Stanton. The songs were produced by Floyd Domino, who also takes over on piano.

 

Thank you John and Mary Ann Edson for sharing your talents to help fight Batten disease!
JOIN THE CONVERSATION! 

BBDF launches the Batten Blog

 

 

Introducing the Batten Blog! This is a space for YOU. Here you can share YOUR story while reading the most recent Batten updates. Every week, we will highlight volunteers and supporters and provide the most up-to-date research and funding updates via our "Scientists." We don't want this to be a one-sided conversation - share your experience and perspective with our community. 
                    

 
A MOTHER'S STORY
5th Grade Hope
 

Back to school always marks the end of summer with anticipation and excitement for a new season for children.  Even parents welcome the new routine. New beginnings abound for children of all ages and suddenly we find ourselves in a new place.  Kindergarten gives way to first grade, elementary gives way to middle school, and on it goes until our kids finally go off to college or into the real world and we wait breathlessly for the results of all of our hard work.

 

Continue Reading » 
RUN TO THE SUN TEAM SPOTLIGHT
Dimensional Fund Advisors

This past April, 25 teams participated in the exhilarating, overnight trek from Enchanted Rock to Austin, Texas. We were truly inspired by the teamwork, bonding and support that transpired between teams and runners along the route. We'll be spotlighting one team each newsletter. Runners, here's to you!

 

Dimensional Fund Advisors  

Signing up the week before the event, the Dimensional Fund Advisors team was invigorated starting the 90 mile trek through the hill country. As a company, Dimensional pushes "the frontiers of innovation." Accordingly, the DFA team pushed themselves as they ran to raise funds for Batten disease research. Thank you for your support DFA!
 
BBDF WELCOMES NEW TEAM MEMBER
Meet our Communications Manager, Berkley Kingman

 

We're excited to add Berkley Kingman to our team as Communications Manager. Before joining BBDF in July, she worked at Swift Worldwide Resources in Houston. Berkley's skills include social media, website administration, event planning, and communications. Having interned for Downtown Alliance San Antonio and International Downtown Association, she has an in-depth understanding of the nonprofit sector. Berkley graduated from University of Virginia with a B.A. in Urban & Environmental Planning and Religious Studies. 


 

You can reach Berkley at bkingman@beyondbatten.org or 512.275.2600.
 

 
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Beyond Batten Disease Foundation
512-275-2600 or 1-877-6BATTEN
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