July/August 2016                                                                                                                 Volume 27, Issue 6
In This Issue
BDSRA Family
Resource Corner

Attention parents!
BDSRA Wrightslaw Stipends Available for Parent Training Special Education Workshops
IEPs, IDEA, ESY...the list of acronyms goes on!  When it comes to special education for your child or teen with Batten disease, do you understand the nuts and bolts and how to best advocate for appropriate services for your child in the classroom?

BDSRA is pleased to announce the availability of ten workshop stipends for parents to attend or download the Wrightslaw Special Education Law and Advocacy training programs in 2016!  

Donor Gifts
The Batten Disease Support and Research Association has been remembered many times in the past two months by families and friends affected by Batten disease.  
In Loving Memory
Research News

Dr. Jonathan Mink was recently elected as the President-Elect of the Child Neurology Society.  Dr. Mink is a 2016 BDSRA research awardee and the director of the the BDSRA Center of Excellence at the University of Rochester Medical Center.

Read the full article here

2016 Research Grant Awards

BDSRA is pleased to announce the 2016 research grant awardees.  Beyond Batten Disease Foundation, Drew's Hope, Noah's Hope - Hope4Bridget and The Thisbe and Noah Scott Foundation have partnered with BDSRA to co-fund these important projects.   

Click here to see the 2016 awardees

Conference Highlights
The BDSRA Annual Family conference in St. Louis was a great success. There were 400 attendees, representing Canada, New Zealand, the United Kingdom and the US.  

We had a fire truck, sibling outings, the first pitch thrown out at a baseball game, handmade hats, pet therapy,super heroes and a photo booth.

This year during the opening session, Dr. Erika Augustine and Margie Frazier, Executive Director of BDSRA, used Mentimeter to ask questions of the attendees.  Click here to see the questions and answers. Thank you to everyone who participated!

Save the date for the 2017 BDSRA Annual Family Conference, celebrating 30 years of BDSRA.

When: July 6-9, 2017

Where: Wyndham Grand Pittsburgh Downtown

Minion hat by Heaven's Healing Hats


Quick Links
Golfing for a Cure

The 13th Annual "Kevin's Fund" Golf Tournament took place in June in Hagerstown MD. The day included a 4 golfer scramble, hole-in-one prizes and a lunch buffet. $5,000 was donated to BDSRA in memory of Kevin Lumm. Thank you to the Lumm family and the Maugansville Ruritan Club for your continued support of Batten families.
Family Stories

The Park Family

In the last two months there have been very touching articles published about some Batten families.  Please click on the links below to read the stories.

The Grahams   http://bit.ly/29OFYDH
The Johnson   http://bit.ly/2awOich
The O'Learys   http://bit.ly/2ak3V7c
The Parks         http://bit.ly/2aEi7sl

The Royaltys   http://bit.ly/2aZ5FmC

Board Elections

BDSRA Board of Director nominations will be opening the end of next month. Be sure to follow our Facebook page for updates. 

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