February 2017                                                                                                                     Volume 28, Issue 2
In This Issue
BDSRA Family Conference
We are excited to be hosting the family conference in Pittsburgh PA this summer, July 6-9.  The conference  will be at the The Wyndham Grand Pittsburgh Downtown, and registration will be opening this week. Be sure to like our conference Facebook page to get all the updates, and visit our conference website page too!



This year we celebrate the 30th anniversary of BDSRA, and would love to see old photos and hear stories you may have.  Please email share30@bdsra.org for more information.
Donor Gifts
Thank you to the donors this month who gave generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge 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. 

 
BDSRA Advocates for Batten Disease in Research and Drug Development at the LDN WORLD Symposium

The Lysosomal Disease Network WORLD Symposium was held on February 13-17 th in San Diego where Batten disease researchers gave presentations in the ballroom and showcased their posters in the exhibit hall to hundreds of their fellow researchers, clinicians and industry leaders. It was a dynamic event that spanned all aspects of lysosomal disease research. A full-day of presentations was focused on each of the following areas:
* Basic and bench research - technology, innovations and applications, as well as differences at the cellular level
* Translational research - moving from the lab to therapies
* Clinical research - dedicated to results from clinical trials

Of the many lysosomal diseases discussed at WORLD, Batten disease had a strong presence and the BDSRA was represented in the exhibit hall front and center. 

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In Loving Memory
Quick Links
BDSRA Family
Resource Corner
Grief is felt deeply by all members of our community
 and having the support of friends and loved ones is 
incredibly important. However, being separated from a 
support system because of school or careers  can add an additional layer of complication to the grieving process. 
This article offers expert advice on recognizing symptoms of grief, accepting loss, and getting help. It begins with:
 
" Grief after a deeply-felt loss can range from a sadness 
that lingers, always hovering in the background, to a total emotional upheaval that turns your entire world upside down. For the typical person, dealing with a loss can be one of the most difficult things to get through. But for a college student, it can be even more complicated."

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