July/August 2017                                                                                            Volume 28, Issue 5
Exciting things have been happening this summer at BDSRA, as you know it is one of our busiest times of the year. We are excited to reflect on the conference and the many other things our community has been up to in this issue. Thank you for reading! 
Top 10 Conference Memories

Pittsburgh was another successful family conference. There were 450 attendees, 60 sibs and 17 new families. So many memories were made, we've captured some of our favorites here to share with you! 

Read Our Top Ten Conference Memories
A Legacy Created 

Multiple communities have felt the impact of decades of service from the Allio family. When the news of Joseph's retirement was announced earlier this year, the team of people working around him celebrated his 30+ years of service with the Fairfield Police Department. While there were tears from many of the strong people in the room that day who had become family, Joe kept it together. 

Read the full story here
Climbing Mountains for Batten 

Those of you who are parents that read this newsletter share something. An incredible climb that someone who is not in your shoes won't quite ever be able to understand. Every day there is something. Every day there are loved ones who see and feel the urge to do something. When Bekah Murphy learned that her brother, Danny Bowman, received the most devastating news that a father could hear, she felt this too. 
Thank You Sponsors! 

BDSRA families send a very loud thank you to this year's Sailing to a Cure conference sponsors. Industry partners, new Pittsburgh corporate sponsors and our host family the Timko's welcomed us with their financial gifts and open arms. 

Our family foundation partners shown brightly with larger gifts and greater diversity than ever before, for our yearly signature event.  A record $127,000 was raised to bring 3 days of fun, connection and courage to Pittsburgh. We'll see you in Music City July 19-21, 2018! 

Batten Awareness Weekend 

Thank you to all who participated in Batten Awareness Weekend in June. Together we raised $6,000 and spread the word about Batten disease to our friends, neighbors and co-workers.
We are pleased to announce that Team 4 Titus & Ely had the most team members and also raised the most money this year.  Rally for Rex was next, followed by Cowabunga Jeff.  
If you would like to purchase the charcoal gray and yellow shirt from this year or the gray and teal shirt from last year we do have some left, contact Tracy Kirby at tkirby@bdsra.org or 614.973.6013.

Thank you Donors! 

Thank you to the donors the last three months who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions, they allow us to keep serving families and advancing the science of a meaningful treatment. This year we celebrate 30 years! Your dollars and support have helped create a leading organization in the Batten disease community and we are dedicated to continue the legacy of children and families. 

View recent donor gifts
2018 Family Conference

Mark your calendars for next year's family conference where we will Walk the Line to a Cure. It will be held from July 19-22 at the Nashville Airport Marriott. To stay in the loop about the latest updates for 2018, like the BDSRA Family Conference Facebook page and visit our website for photo memories from this year! 

In Loving Memory 

Not a day goes by that we don't remember those that we have lost from this disease. It is in their honor and memory that we keep fighting every day.

Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org