BBDF attends 2014 BDSRA Annual Family Conference

BDSRABBDF had a great weekend at the 2014 BDSRA Annual Family Conference held in Columbus, OH! We were able to reconnect with old friends as well as meet new families. It is amazing to see the Batten community come together in strength and numbers.

While there, we sponsored the plenary session and provided Batten families with juvenile research updates, which included our New York Stem Cell Foundation partnership. In order to create induced pluripotent stem (iPS) cell lines, we asked families to participate in a skin punch biopsy. We took skin samples from young people affected by juvenile Batten disease as well as unaffected family members. Reprogramming juvenile Batten iPS cells to become brain and heart cells will provide the infrastructure needed to investigate what is going wrong with the cells adversely affected by the disease. This project is a result of teamwork and our researchers will benefit exponentially. For more information, visit our website

Overall, it was great to come together with our community (and escape the Texas heat) for a couple days! Thank you BDSRA for hosting an informative and supportive conference! 

Media Jenyis: Chris Martin

BBDF would like to recognize Chris Martin for his service as Volunteer Media Coordinator. With two Emmy Awards and past experience on 60 Minutes, The Oprah Winfrey Show, and the Dr. Oz Show, it is not a surprise that Chris is the creative mastermind behind BBDF’s promotional videos. He has been instrumental in helping us raise awareness about Batten disease. You may also recognize him as the Pink Cowboy at the Run to the Sun Relay! THANK YOU to Chris for sharing your Jenyis with us! We wish you the best of luck with your new company – CAVU Media Works!