July 2019                                                                                        Volume 30, Issue 7
2019 BDSRA Annual Family Conference 

The 2019 BDSRA Family Conference was a huge success!! We had nearly 400 attendees, which included 100 families, 70 siblings, 25 affected loved ones, and 90 researchers/industry/patient organization representatives. 

You can see photos from the conference on our Facebook page here

If you'd like to see the 2019 Conference Schedule you can find it here

We are so excited to see everyone in Cleveland, OH July 9th-12th for the 2020 Family Conference!

Volunteers are an incredibly important part of the conference every year. Whether they are welcoming attendees, helping in childcare, or going on outings with sibs, we don't know what we would do without you! 

Where you can find BDSRA this fall

BDSRA staff travels year round to educate physicians, researchers, and other professionals about Batten disease and the impact it has on families. Below you can see the meetings we plan to attend the rest of 2019. If you know professionals that work with your child will be attending any of these meetings please have them stop by our booth! 

- Global Genes  RARE Patient Advocacy Summit

- Child Neurology Society (CNS) Annual Meeting

- National Society of Genetic Counselors (NSGC) Annual Meeting
5th NCL Translational Approaches Meeting

- American Epilepsy Society (AES) Annual Meeting
Batten Memorial Angels

The memorial committee has been working very hard to ensure that those who were memorialized on the previous memorial are not forgotten. They were able to create these mementos for families from the previous memorial panels.  Much time and thought went into this, and we appreciate all that they have done.  If you would like to purchase a memento please visit our website.  
Teal Shirts Are Here!

Be sure to get yours before they run out. You can place your order here.  

The BDSRA store has candles, pens, car magnets and other items as well.  Click here to see all that we offer. 

Fundraising Highlights

Earlier this summer the Medley family of Florida organized a kickball tournament in memory of Jake Medley.  They had 8 teams participate this year, and the winning team was led by Jake's cousin, Henry Jacqmein. In addition to the tournament there was also a silent auction. They raised over $4,000 for BDSRA!  

The Beish family of Maryland held an obstacle course race on International Batten Disease Awareness Day, June 9th.  They also had a bounce house, face painting and kindness rock painting. The community came together to support Conner and his family, and th
is wonderful event raised over $7,000 for BDSRA. 

Thank you to everyone who helped organize, fundraise for and particiapted in these  events. Your support of the families is greatly appreciated!
Recent Fundraising Events

In Loving Memory 

Remember with us those we have lost to Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

Thank You BDSRA Community of Donors! 

Thank you to the donors last month 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. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families. 

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