Click here to read the latest issue of the newsletter
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BDSRA Memorial Names
The Batten disease community is one of support and strength, and we know that remembering loved ones is so important to you and your family. If you would like to have a name added to the Batten Disease Memorial, or update any information please click here to complete the form. All information must be submitted no later than July 8th, 2019.
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June issue of the Illuminator newsletter
The newsletter is here! Click here to read the latest issue.
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BDSRA Virtual 5K
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.
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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.
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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
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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.
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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.
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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.
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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.
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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.
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