June 9th is International Batten Disease Awareness Day! Our goal is to honor and support those affected by Batten disease and raise awareness.
Join us as we celebrate families around the world and raise money for research! BDSRA is hosting the 2019 International Batten Disease Awareness Day Virtual 5K on June 9th, 2019.
Click here to read more about the virtual 5k and register for the event here.
(Read More)
BDSRA Memorial
Dear BDSRA Community,
As you may know, BDSRA is creating a new Memorial to replace the beloved one that was built in 2004. The original Memorial was created by a group of families who had lost someone to Batten Disease and provided a place for families to visit during the Annual Conference, a legacy of those we have loved and lost. Now, at over 500 names, it has outgrown our ability to keep up, and we are launching a new Memorial to take its place. While the old Memorial is deeply cherished, the new one will provide a living legacy – and the ability to grow as needed. The committee charged with creating this new Memorial is made up of families who were involved in the creation of the original one.
Key features of the new Memorial include:
Interactive touchscreen interface – the ability to search for a specific name
A profile for each name that includes a story, family information, and photo
Features the custom stained glass from the original Memorial
Future phases include the ability to add/view information through the internet/social media
We are working diligently to have this ready for the July Annual Conference in Denver – but we need your help.
(Read More)
(Read More)
Read the latest issue of the newsletter
The latest issue of the newsletter is here! Click here to read about the new executive director, how you can advocate in your state, and all things family conference: https://conta.cc/2GNSeVy
(Read More)
(Read More)
BDSRA Hires New Executive Director
Dear BDSRA Community,
It is my pleasure to announce that Tauna Batiste will be joining our BDSRA team as Executive Director on May 20, 2019.
Tauna is a skilled nonprofit professional who has been committed to community service from an early age. She joins the BDSRA with over 20 years of professional experience in nonprofit operations. Beginning her lifelong career as a youth volunteer, Tauna has held roles in fundraising consulting, project management, program design and management, and executive leadership. Her personal philosophy of working to assist others in reaching their greatest potential and living their best possible life is the driving force of her work ethic and approach.
Tauna received her Master's degree in Nonprofit Management from Eastern University in St. Davids, Pennsylvania; and undergraduate degree from Taylor University Fort Wayne. She hails most recently from the National Hemophilia Foundation, Central Ohio Chapter, where she served as Executive Director overseeing and providing services to the bleeding disorders community in a 28 county territory.
(Read More)
(Read More)
BDSRA Board of Directors
Brock Benroth is a small business owner, and the married father to two daughters: Kate, who had CLN2 and is a Batten angel and her older sister Lauren, who is a carrier. He has joined the board because through his family’s journey with Kate, her participation in a clinical trial, his experience as the Ohio BDSRA chapter president, and their fundraising efforts he has a good connection with other Batten families and the BDSRA that will allow him to put the passion he has for helping people to good use.
Mike Collins works for Numotion as an Assistive Technology Professional (ATP) and Certified Rehabilitation Technology Supplier (CRTS) in Mokena Illinois. Mike has been a member of the board since 2011 and brings his industry knowledge and experience to the board in order to facilitate an exchange of information between Batten families and industry professionals in the challenges we face with Batten Disease.
(Read More)
(Read More)
BDSRA Executive Director
BDSRA is currently accepting applications for the position of Executive Director. Founded in 1987, our long-term vision is a world without Batten disease. Our mission is to support Batten families, fund and facilitate research for treatment and a cure, and advocate for action. Please click here for more information and to apply.
(Read More)
(Read More)
Emerging Research Conference Travel Award Winners
An Ngoc Dang Do, MD PhD
NICHD, NIH For many young investigators of rare diseases, having the opportunities to present the research and to discuss in-person ideas for partnerships with other researchers, families and organizations are crucial. This encourages continued commitment and collaboration towards common goals. I experienced this from having attended the 2018 International NCL conference in London and the 2018 BDSRA meeting in Nashville. You have made my attendance at the 2018 NCL conference possible through the BDSRA Emerging Researcher Travel Award. It is a humbling reminder for me that with all the challenges NCL families face daily, you have made a dedication to supporting others. Thank you. Best wishes as we continue to work together towards a better understanding of these diseases. Shannon Dean, MD PhD
University of Rochester School of Medicine The opportunity to attend the meeting allowed Dr. Dean to discuss future potential collaborations between the University of Rochester Batten Disease Center and other groups.
(Read More)
NICHD, NIH For many young investigators of rare diseases, having the opportunities to present the research and to discuss in-person ideas for partnerships with other researchers, families and organizations are crucial. This encourages continued commitment and collaboration towards common goals. I experienced this from having attended the 2018 International NCL conference in London and the 2018 BDSRA meeting in Nashville. You have made my attendance at the 2018 NCL conference possible through the BDSRA Emerging Researcher Travel Award. It is a humbling reminder for me that with all the challenges NCL families face daily, you have made a dedication to supporting others. Thank you. Best wishes as we continue to work together towards a better understanding of these diseases. Shannon Dean, MD PhD
University of Rochester School of Medicine The opportunity to attend the meeting allowed Dr. Dean to discuss future potential collaborations between the University of Rochester Batten Disease Center and other groups.
(Read More)
Collaborations Pharmaceuticals, Inc. to partner with Washington University in St. Louis on Batten Disease
We are excited to share this research update from Collaborations Pharmaceuticals. Thank you to all those who have helped to fund the research that has made this a reality. To read more about the partnership between BDSRA and Taylor's Tale please click here.
(Read More)
(Read More)
BDSRA 2019 Board Nominations
The BDSRA Board of Directors has several open seats for the term beginning January 2019. 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 info@bdsra.org by September 10th. Click here for more information.
(Read More)
(Read More)
REGENXBIO Announces Pipeline Expansion with RGX-181 Gene Therapy for CLN2 Form of Batten Disease
The expansion of Batten Disease treatment options is crucial to our community’s future. We are excited to share this announcement from REGENXBIO who plans to submit an IND for a new gene therapy for CLN2 in 2019. Because of news like this, we continue to be hopeful about progress for patients and families. You can read the full press release here.
(Read More)
(Read More)
