August 2019                                                                                        Volume 30, Issue 8
Batten Disease Clinical Trials and Translational Research Update: Dr. David Pearce

We are so excited to share Dr. Pearce's Clinical Trial and Translational Research Update from the 2019 BDSRA Annual Family Conference. 

Clinical Trial and Translation Research Update Dr David Pearce
Clinical Trial and Translation Research Update Dr David Pearce

You can follow along with Dr. Pearce's slides  here
Resource Corner: JNCL Childhood Dementia and Education Book

The JNCL Childhood Dementia and Education book is here! Contributors Bengt Elmerskog, Anne-Grethe Tøssebro  Heather Adams, PhD, Rebecca Atkinson, Linn Sophie Rian, and Ida Holmen joined families at the 2019 BDSRA Annual Conference to share highlights from the book and the overall JNCL and Education Project. 

The book covers topics important to families affected by all forms of Batten disease. These include, communication challenges, motor function, physical therapy, occupational therapy, music therapy, sibling issues and so much more. 

Thanks to a generous donation from Sanford Health we are able to provide books to families and educators at no cost. If you would like to have a book sent to you please email Noreen Murphy at and include your mailing address. 
Talking to siblings and other children about Batten disease

Talking with your unaffected children or your child's classmates is a common topic of discussion among Batten parents. There are a million different ways a family can handle these discussions. Below are a few pieces of advice from counselors, parents, and siblings. 

Angela Hamblen-Kelly, Grief Counselor, works with families of children with terminal illness and suggested the following during an Ask-An-Expert chat with Batten families. 

"Keep being open and honest about their sibling having a disease and treatments - they will probably guide you. Meaning - if they ask a question about prognosis, etc that is the time to softly and age appropriately answer. I wouldn't encourage you to sit them down and have a conversation unless they nudge you that direction with their questions. It would be appropriate to sit them down if their sibling's condition made a significant change quickly. Otherwise, let them guide you. They will more than likely ask when they are ready for the information."

The Courageous Parents Network (CPN) has many resources on how to communicate with siblings and other children. 

In the Helping Siblings Cope guide Nancy Frumer-Styron, Psychologist and
Grief Counselor Content Director for CPN, says...

"They're going to have questions. It's important not to lie to them. Depending upon how old they are, your children may ask lots of questions. They may ask a couple of questions and run away and then come back a few days later. It's important not to lie to them. Give them short pieces of information. Let them take it and think about it, and if they come back and say "Remember when you said...?" -- now, now they have another question."

Below are a few more resources from CPN.
We would love to hear any additional advice you may have for other Batten families. If you would like to talk with one of our incredible SIBS leaders about their experience please email us at

This month we have new Facebook fundraisers organized by:
We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media!
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. 

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