September 2019                                                                                        Volume 30, Issue 9
BDSRA Research Updates

If you missed the 2019 BDSRA Annual Family Conference you can hear updates from the Batten research community in the video below. 

We are so thankful for our dedicated scientific community and for our generous donors whose support allows us to fund and facilitate research around the world. 

Batten Research Overview
Batten Research Overview

BDSRA Staff Update: Meet Colin! 


Colin Monteith joined BDSRA last fall as a part time employee, and we are happy to introduce him as our new full time Development Coordinator.  In that role he will work closely with Tauna Batiste, our Executive Director, to support the execution of the BDSRA's comprehensive, mission-driven advancement program.  Additionally, Colin will be involved with stewardship activities related to non-profit fundraising and relationship management, including working with a team to create and implement the fundraising, development and communications strategy for BDSRA, as well as donor and grant research and tracking.  Be sure to say hi to him when you see him!
 
September is Newborn Screening Awareness Month!

The Batten community is hard at work advocating to be added to the federal Recommended Uniform Screening Panel (RUSP) and each state's test. You can learn more about newborn screening at Baby's First Test.


Resource Corner: Kids Wish Network
Kids Wish Network has been making dreams come true for hundreds of thousands of children since 1997. They are dedicated to infusing hope, creating happy memories, and improving the quality of life for children who are experiencing life-altering situations.

In addition to Granting Wishes they have created programs to benefit children and families nationwide. These programs include:


- Hero of the Month
- Project Toy Drop
- Holiday of Hope Gift Banks
- Kids Helping Kids
- A Child Forever Funeral Assistance
Board Nominations


The BDSRA Board of Directors is accepting applications for the term beginning January 2020. If you have expertise you feel would be relevant and beneficial to the organization and are interested in learning more about serving, please contact the BDSRA board    at [email protected] by October 20th. 
Battling Batten Disease: 5K Run & Family Walk

Join BDSRA at the Battling Batten Disease 5K in Columbus Ohio! 
First organized in 2009, the Battling Batten Disease 5K (formerly Celia's Walk) is the result of efforts by Central Ohioans to raise awareness and financial support for research for Batten disease. 

Touched by the story of a local family's journey with their daughter Celia, coworkers at the Wexner Medical Center's Medical Intensive Care Unit decided to organize a large-scale fundraiser. All registration fees and contributions are donated directly to the Batten Disease Support and Research Association. The walk has grown to now include apparel sales and a substantial raffle, where donated items last year included a hot air balloon ride, a photography session, and theater tickets.

You can see run details and register here. 

Follow the Battling Batten Disease Facebook page for updates!




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. 

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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