February 2016                                                                                                                     Volume 27, Issue 2
In This Issue
SIBS Art Corner
We want to share the artwork that our fantastic sibs create!  Each month we will be asking for their masterpieces, and we will share them in the newsletter.  This month we would love to see self portraits. Whether it's crayon, paint or any other medium, we want it.  Please use 8 1/2 by 11 paper, and send them to the office by March 15th: 1175 Dublin Rd, Columbus OH 43215. We can't wait to share them with everyone!

BDSRA Family
Resource Corner
Sensory Shoebox Activity Kits

Jo Willer is a retired special educator and has a 9 year-old granddaughter, Kate, who has Late Infantile Batten disease (CLN2).   She was kind to share her experience with sensory shoebox activity kits, a tool that helps provide stimulation to children who are nonverbal and non-ambulatory, but can be done with children of varying abilities.   Kate is blind, unable to walk or talk and has minimal use of her arms and hands.   

In Loving Memory
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.
Welcome to the new BDSRA monthly newsletter. We will be sharing more information with you more often.  This replaces our quarterly format.

Batten Researchers Lobel and Sleat Receive  the Edison Patent Award for Their Work in CLN2
Dr. Peter Lobel (L) and Dr. David Sleat (R) received the Edison Award from the R&D Council of New Jersey last November.  Click here to read the full article from the Rutgers Office of Research and Economic Development.

BDSRA Annual Family Conference Updates  and Registration
Hotel reservations are now being accepted by the Renaissance St. Louis Airport Hotel,  site of this year's Batten family conference, July 14-17. 
To reserve your room please visit http://cwp.marriott.com/stlsa/bdsra2016/ .  If you would like to make your reservations by phone, please call 800.228.9290 and mention "BDSRA Batten disease" to get the discounted rate of $105 per night.   The conference room block dates are July 13, 14, 15 and 16. If you need additional dates, please contact the hotel Reservation Coordinator, Charlotte Tourkakis   ctourkakis@renaissancestlouisap.com  or 314.890.3151. Please note that additional dates are based on room availability.  Reservations must be made by June 21, 2016.

Online conference registration is available at: http://bit.ly/1Qyu5xv

BDSRA Winter Board Meeting Updates

2016 BDSRA Winter Board Meeting in Tampa

All board and staff members came together January 29-31 to determine the budgetary and strategic needs of BDSRA for the coming year.  It was a packed 2 days of discussion and reflection.  

The board welcomed new member Kristen Drago and returning re-elected member Tony Ferrandino.

Quick Links
Show Your Strength,
Become a BDSRA Member
Why Join BDSRA? Because membership is a vital link to others
facing Batten disease, and membership strength is a leading indicator to policy makers and industry that Batten disease deserves attention, support and funding. Click here to join today!

BDSRA Member
 of the Month
Darlene Royalty, BDSRA board member and mom of three angels explains why membership matters to her and her husband Randy.

Have T-shirt,
Will Travel
In memory of her two children, Brittany Butcher had a fundraiser and sold t-shirts and sweatshirts to friends and family last fall. They then traveled to Columbus from North Carolina to attend the battling for Batten 5K Run and Family Walk with local family members. Over $1,400 was donated to BDSRA in memory of Hudson and Leila Mimlitsch.

Giving Back
Agnes worked with
the Gahlbeck family
for almost 6 years and wanted to do
something to give back, so she challenged her family and friends to complete a Spartan race.They took her up on her challenge and over $1,000 dollars was donated to BDSRA in Ethan's memory.
(correction from last month, we identified the Davies family in error in the original story) 

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