June 2016                                                                                                                     Volume 27, Issue 5
In This Issue
BDSRA Family
Resource Corner

Help your child read with Learning Ally
Are you familiar with Learning Ally?  Learning Ally is a national non-profit based in the U.S., that began in 1948 as the New York Public Library's "Recording for the Blind" to aid returning veterans who were visually-impaired from injuries sustained in WW II. 

Today, Learning Ally has the world's largest collection of audiobooks.  For kids who learn differently, especially those with visual impairment, Learning Ally's services are invaluable! 

Learning Ally provides access to 80,000+ human-narrated audiobooks that enable people who are visually impaired to "ear-read" when reading the printed word is a struggle.  Learning Ally provides individual consultation, webinars with experts, and has an online Facebook community for parents.  Learning Ally also works with educators and schools with tools to track students' reading progress and provides support through webinars and ongoing training. 

Visit Learning Ally's web site at www.learningally.org to learn more.
Donor Gifts

The Batten Disease Support and Research Association has been remembered many times in the past month by families and friends affected by Batten disease.
In Loving Memory
Research Update

Dr. Sara Mole is awarded an EU Horizon 2020 grant

Read the full article here

Batten Awareness Weekend
Team Leighton's Army

Thank you to everyone who participated in the Batten Awareness Weekend Virtual 5K!

There were 255 entrants who walked, ran, rode bikes and horses, and raised $8,000 for Batten disease research. 

Here are some of the top participants:

First to register : Megan Chandler
Most team members
First Place: Team Cowabunga Jeff (78 members)
Second Place: Leighton's Army (29 members)
Third Place: Team 4 Titus and Ely (26 members)
Top fundraisers 
First Place: Team Cowabunga Jeff
Second Place: Super Sam
Third Place: Team 4 Titus and Ely
Best time male: Mike McDonough
Best time female: Jennifer Bertrand

And to all who that created teams, we thank you!
   Cowabunga Jeff                      Nick's Battle
   Dank n Decker                        Oliver's Odyssey
   Elijah's Victory                         Super Sam   
   Hope for Dante                        William's Journey
   Horses for Batten                     Team Hawkins
   Ladies Love Rex                      Team Hetteberg
   Leighton's Army                       Team Nicholas
   Michael's legacy                       Wes' Rainbow
                         Team 4 Titus and Ely
     Click here for pictures.
Family Conference Updates

We are looking forward to seeing everyone in St. Louis next month!  Here are a few updates for you:

Friday Life Goes on Outing: Grant's Farm
Friday Baseball Outing: River City Rascals vs.                Schaumberg Boomers
Friday SIB Outing: City Museum

Saturday SIB Outing: Grant's Farm
Kid's Parade theme: Superheroes

If you are interested in volunteering this year please click here

Quick Links
Kickball Fun

The Kick Batten for Jake kickball tournament was held last month in Jacksonville, FL, in memory of Jake Medley.  It was a day filled with sunshine, fun and laughter.  There were 85 participants and $3,300 in proceeds donated to BDSRA.
Running for Kate

The Team Kate 5K for Kate Benroth took place last month in Vaughnsville, OH.  The day included raffles, kids' games, yoga, a bake sale, a 5K run and 1-mile fun walk. Thanks  to the generosity of all the participants, over $3,000 was donated to BDSRA for the family conference and research in honor of Kate Benroth.  

Conference Registration Information
Hotel and online registrations for 
the BDSRA Family Conference are  now closed.  If you need to 
reserve a room or make any  changes to your current  reservation, please contact the
hotel reservation coordinator, Charlotte Tourkakis at 

If you need assistance with conference registration please contact Sara Aldrich at 518.930.2673 or sarab@sswmeetings.com

Batten Disease Support and Research Association | (614) 973-6013 | tkirby@bdsra.org | http://www.bdsra.org
1175 Dublin Road
Columbus, OH 43215