September 2016                                                                                                                 Volume 27, Issue 7
In This Issue
2015 BDSRA 
Annual Report

2015 was a very good year!  Click here to read how families, BDSRA, industry and clinicians are working together for a brighter future for those with Batten disease.
BDSRA Family
Resource Corner

A thoughtful website focused on helping people through every aspect of grief. 

What's Your Grief? is a free website ( run by mental health professionals that provides practical, specific and thoughtful grief support resources. It includes over 250 articles and podcasts that address all aspects of grief, bereavement, and coping. Article topics include Kids, Teens and Grief, Self-care, Supporting a Griever, Funerals and Memorials, and many others.

The What's Your Grief Store contains a growing library of print resources for both professionals and grievers. BDSRA has purchased the following resources and would love to send them to anyone who is interested, contact Noreen Murphy for more information. Please see the following descriptions from their website.

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
BDSRA Supports work in CLN 6, CLN 8 and CLN 3 with Sardiello's Lab
Dr. Marco Sardiello

Dr. Marco Sardiello is an Assistant Professor at the Baylor College of Medicine in Houston, Texas.  In its latest funding round, BDSRA's board approved his proposal:
 mTORIndependent Lysosomal Enhancement for the Treatment of Neuronal Ceroid Lipofuscinoses
He writes:"Many neurodegenerative diseases share as a common cellular feature the accumulation of undigested material, which in many instances has been proven to play a causative role in the pathogenesis of the disease. Pathological accumulation of undigested material is often the result of an overwhelmed cellular degradative system, which can be due either to genetic defects that affect the function of lysosomal and autophagy pathways (e.g., lysosomal storage disorders), or to different causes such as the abnormal generation of aggregation prone proteins (e.g., Alzheimer's, Parkinson's and Huntington's diseases). 

NCL Congress 2016 comes 
to Boston  

The International Conference on Neuronal Ceroid Lipofuscinosis (Batten disease) is held every two years when basic and clinical researchers, clinical practitioners, and patient advocacy representatives meet to discuss recent advances and plan future collaborations.  The next of these meetings, NCL2016, will be held at the Wyndham Boston Beacon Hill in Boston, MA from October 5-8, 2016. This will mark the first time in over eight years that the conference will be held in the U.S. and the first time it will be located in the Greater Boston region, which has emerged as a premiere metropolitan area for cutting edge scientific research involving academic centers, biotechnology, and pharmaceutical industries. Each Congress provides a forum for vigorous scientific exchange among these diverse and complementary stakeholders in order to facilitate more rapid advancement of scientific progress. The scientific organizing committee has laid out topics of priority for meeting sessions, and plenary speakers from academic and industry groups. Sessions will be co-chaired by a senior investigator matched with a junior investigator, and the junior investigators will also have opportunities for presenting their research through platform presentations and via poster sessions throughout the conference.  Thanks to generous support, the Rare Disease Report will be on hand throughout the Congress to report findings via online articles and presenter video interviews.  For more information:

Quick Links
Board Elections

BDSRA Board Nominations Open
There are 4 open seats for the BDSRA Board of Directors for the new term beginning January 2017. 
Those interested in running for a board seat or nominating an individual should contact Darlene Royalty at by October 10th for details. 
Board ballots will be mailed to all BDSRA members on October 24th. For more information click  here. Membership dues may be paid online at


Marcy Sortino with Ravens Nest 8
and Nick Heuchan

Thank you to the Heuchan family for submitting Nick's Battle Foundation to the Baltimore Chamber of Ravens Nest 8 for consideration for their combined charity donation to one specific charity. They were accepted and in turn donated $3,900 to BDSRA for research in Nick's honor.

Photo Booth Pictures

Batten Sibs

Laura Jordan of Personal Expressions Photo has posted the link for the photo booth pictures from conference.  Click here to view or download the pictures.

Poster Sessions

If you missed any of the posters from the Research Open House and Poster Session at the 2016 Family Conference you can see them here, as well as ones from previous years.

Staff Update

We said goodbye to Becky Hetteberg in September and wish her well in new endeavors.  
Batten Disease Support and Research Association | (614) 973-6013 | |
1175 Dublin Road
Columbus, OH 43215