October 2019                                                                                        Volume 30, Issue 10
Get to Know BDSRA Executive Director Tauna Batiste

At the 2019 BDSRA Annual Family Conference new BDSRA Executive Director Tauna Batiste shared a little about her journey to BDSRA and how Batten disease has impacted her life. 

You can hear Tauna's story in the first 10 minutes of the video below. 

BDSRA Opening Session with Dr Derek Weaver

Technology & Rare Neurological Diseases Symposium (TRNDS)


The University of Rochester hosted the second bi-annual Technology and Rare Neurological Diseases Symposium (TRNDS) on Friday September 13th, 2019. Leading clinical researchers, forward-thinking health technology leaders, experts in regulatory science, and influential patient advocates, including the Executive Director of BDSRA, Tauna Batiste, led incredible discussions about emerging gene-based therapies for neurological disorders, engagement and patient-centered trials, access to novel therapies, and the cost of these technological advancements. The event was an incredible success with nearly 200 individuals in attendance.

"TRNDS is one of the premiere meetings in the scientific space, capturing what innovations are coming forth and sharing the information cross functionally. Many of the speakers shared about new approaches and opportunities to approach neurological disease treatment. I was pleased to be invited to share on behalf of patient advocacy groups. I shared specifically on how PAGs can be helpful and vital partners in the clinical trial process." - Tauna Batiste BDSRA Executive Director  

You can learn more about TRNDS and see the agenda here. 

Check out Tauna's pre-meeting interview here. 
Travel Stipend Application Open for Rare Disease Week on Capitol Hill 2020

From our friends at RDLA " We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Rare Disease Week on Capitol Hill brings rare disease community members together to learn about federal legislative issues, meet other advocates, and share their rare stories with legislators.

The travel stipend application for Rare Disease Week on Capitol Hill 2020 is now open! Please find the application  here. "

Global Genes RARE Patient Advocacy Summit

In September BDSRA staff attended the Global Genes RARE Patient Advocacy summit. This summit is  the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world. 

For BDSRA having the opportunity to meet and connect with our colleagues in the rare disease space is invaluable. Additionally it is energizing and exciting to hear updates and insights of breakthroughs and successes in this space. 

It was wonderful to see Batten advocates Sharon King and Laura Edwards talk about gene therapy with Dr. Steven Gray!



Congratulations to Tracy VanHoutan and Jennifer VanHoutan, founders of Noah's Hope, on their Global Genes award for patient advocacy. Your work is extremely meaningful to so many, and we are beyond grateful!


Battling Batten Disease: 5K Run and Family Walk

The Batten Disease Support and Research Association (BDSRA) is pleased to share with you that on Sunday November 3, 2019, the "Battling Batten Disease 5K Run and Family Walk" will be held at Scioto Audubon Metro Park in Columbus, OH. This fundraising event is organized by an incredible group of volunteers in memory of Celia Betz and her brave fight against Batten Disease.

You can register onsite for the run or stop by to visit with Batten families and the central Ohio Batten community! 

Visit the race page for more information! 

You can also order a race t-shirt here through Wednesday, November 6th. 



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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