October 2018                                                                                        Volume 29, Issue 8
NCL London 2018 


In September, the BDSRA staff and Board President attended The 16th International Conference on Neuronal Ceroid Lipofuscinoses (Batten disease) in London.  The Batten community convene this international scientific meeting every two years to share recent discoveries and advances for NCL disorders in order to support basic and clinical research and the development of new treatments.

The conference was three busy days full of scientific presentations, meetings with industry, and opportunities to meet families from all over the world. Presentations covered all forms of Batten disease and spanned the entire research spectrum, from understanding the disease at a cellular level to clinical trial results. You can view the full agenda here.

At the conference Noreen Murphy, BDSRA Patient and Family Education Coordinator, presented a poster on the importance of involving the patient voice in the drug development process and chaired the session on Patient Perspectives. 

The staff was excited to see how much progress has been made since the last NCL conference. Particularly, the increased number of talks on translational projects and the inclusion of work in more forms of the disease.   

Emerging Researchers Award Winners


During the 2018 BDSRA Annual Family Conference, attendees raised $12,000 to Fund the Need. Half of that money went toward the  Emerging Research Conference Travel Awards and half to the Batten Family Help Fund Pilot. Because of these generous donations four Batten researchers were able to attend the NCL London conference to connect with other Batten researchers and learn about new research. 

We asked each of them to tell us why this experience was important to them, you can read their responses here!
Resource Corner: Education Resources 

During the school year, your teachers and aides may have questions about how to best serve your child with Batten disease. Below are some resources for parents and teachers that we hope you will find useful and share with your school.  

Teach & Be Taught Manual and DVDs: The student's special needs in the classroom will depend on where he or she is in the arc of the disease process and will vary greatly due to individual differences. Our premiere school resource, the "Teach and Be Taught" manual and DVD series helps in educating members of the child's education team:  the family, teachers, principals, therapists, aides, bus drivers, other students and members of the child's school and community network.  It contains specific recommendations and suggestions for making a variety of accommodations in the school setting. To request this resource contact Noreen Murphy at [email protected] or 614-768-1159. 

Ask An Expert Chats: Each month BDSRA holds an expert chat on our closed Facebook page for parents and caregivers. You can see the transcripts of those chats on our website. 
Our Batten families are experts and can provide timely advice and tips that have worked for them. Parents and Caregivers may join the BDSRA Closed Facebook by reaching out to Tracy Kirby at [email protected] or 614-973-6013.  Keep in mind that individual differences and varying state laws and regulations may affect your child's school situation.

Additional Resources:


Make a Sound for a Cure to be Found - Inaugural Event! 

An amazing community in Waterloo, Iowa kicked-off the first annual "Make a Sound for a Cure  to be Found" 5K Run/Walk/Roll on June 2nd. Jessica Stakey, an Instructional Strategist at Lou Henry Elementary School, led the fundraising effort and worked to ensure a great turnout! The "Make a Sound" theme meant that participants brought noisemakers of all kinds to show their support in memory of Nick Wellner and in honor of Jaxton Engstrom. Both families are beloved members of the Waterloo community. The community weaved in education along the 5K route, with sounds sharing facts about Jaxton, Nick and Batten disease. The event wrapped up with a silent auction and the total amount raised was more than $6,000! The Waterloo community is already looki ng forward to next year's event aligning with International Batten Disease Awareness Day. 




Recent Fundraising Events



This month we have new Facebook fundraisers organized by:
We are so excited each day to log in and see 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. 

View recent donor gifts
 
 
Your gift makes all the difference in the lives of families. 
Batten Disease Support and Research Association | (614) 973-6013 | i [email protected] | w ww.bdsra.org
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