May 2018                                                                                        Volume 29, Issue 3

Conference  Registration Deadline!

Don't forget to register for the 2018 BDSRA Annual Conference by June 27, 2018. You can start your registration  here.

Conference Updates

We are excited to have the following presenters for our Friday morning kickoff!

Tennessee Titans General Manager,  Jon Robinson, will talk about his experience as a parent to a special needs child, and how he remains family focused with a high profile and high stress career.

Batten SIB, Laura Edwards, will talk about her upcoming memoir "Run to the Light" which is a universal story of love, hope, and what it means to believe. Laura called it her "300-page love letter to Taylor and all of the brave children and families who've walked a similar path." 

Linda Phillips will discuss her upcoming novel in verse " Behind These Hands " which is loosely based on her time working with Batten children as a teacher.

Jennifer Bernstein, Executive Vice President at Horizon Government Affairs and Rare Disease Legislative Advocates (RDLA) coordinator, will talk with families about the importance of advocacy and the incredible impact our families can have.

Batten Connect and Laps 4 Life

April 25th-28th Margie was in Manitoba, Canada. The trip included presenting at two Batten Connect Information Sessions and attending the Laps 4 Life Run/Walk. 

Read more about her trip and the incredible work being done in Canada here.
Research and Science Updates

From Bench to Bedside, Getting to an FDA Approval

Batten research is progressing quickly, as new research and potential trials are announced we wanted to take a moment to share the typical path to FDA approval and ways that this path can be different for rare diseases. 

Read more about the drug development process here

Viruses That Treat: Gene Therapy Comes of Age

Nationwide Children's Hospital recently published a great article on gene therapy. The article highlights the work done by Jerry Mendel's lab in SMA and MPS(III). This is the same lab that has worked in CLN6.  Read the article here.

You can now register for the 16th  International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease). 

Visit  for more information and to register. 
2017 Annual Report

Keep your eye on your mailboxes, the 2017 Annual Report is headed your way! 

In 2017, we celebrated our 30th year as an organization, to commemorate this the report highlights some of our accomplishments over the last three decades. 

Recent Fundraising Events

We are so grateful for the following events that raised funds for BDSRA.

Run the Creek 5K 
-In honor of Brandon and Jeremy Hawkins

Jeans for Genes by Sophia Geer and St. John Vianney Catholic School
-In honor of Jacob Geer

Yoga Fundraiser by The Yoga Tree
-In honor of Matty O'Leary

Your support makes our mission possible! 
Donor Highlight: Facebook Funders!

We are so grateful for all of our generous donors, this month we would like to highlight those who have coordinated Facebook fundraiser for BDSRA. We have received nearly $5,000 from Facebook since the system was set up in November 2017. We truly appreciate your efforts and the generosity of your friends and loved ones. 

Shelly Teichmeier Ammerman                                             Brian Lumm
April Barricklow                                                                    Odai Mansour
Brittany Allyse Butcher                                                        Ginni Murphy McClung
Becky Coffman                                                                    Catherine Park
Caitlyn Cramer                                                                    Allen Severance
Kamila DePeri                                                                    Mike Sillman
Brad Detamore                                                                    Cara "Van Winkle" Sillman
Lisa Flowers Headrick                                                        Katelyn St. Gelais
Alicia Headrick                                                                     Emalee Stefanowicz
Missy Barker Kidd                                                                Robert P Stewart
Paul Leyva                                                                           Shannon Trimmer
Beth Scanlon Lorenz                                                           Judy Terry Uline
In Loving Memory 

Remember with us those we have lost from 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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