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Batten Disease

Theodore’s Social Media Hub

Theodore’s Miracle Newsletter

Subscribe to our monthly newsletter to get the latest news from Theodore's life and our efforts to Raise Awareness for Batten disease as well as the latest updates from Batten and Rare Disease communities.

Latest News

Say a Fable to Raise Awareness for Batten Disease

RSS Updates from the Batten Community

  • BDSRA Hires New Executive Director April 16, 2019
    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 […]
    tkirby
  • BDSRA Board of Directors November 20, 2018
    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 […]
    tkirby
  • BDSRA Executive Director October 18, 2018
    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) The […]
    tkirby

Theodore’s Miracle Newsletter

Subscribe to our monthly newsletter to get the latest news from Theodore's life and our efforts to Raise Awareness for Batten disease as well as the latest updates from Batten and Rare Disease communities.

Latest News

RSS Updates from the Batten Community

  • CLN2 Cerliponase Alfa FAQ March 17, 2019
    What is cerliponase alfa? Cerliponase Alfa, which is marketed as Brineura, is the first disease-modifying treatment for any type of Batten disease. Children with CLN2 Batten disease have a genetic mutation which prevents them from producing enough of an enzyme…
    BDFA
  • NICE Decision February 22, 2019
    NICE Decision – 22.02.2019 We are very disappointed that NICE has published their decision not to recommend Cerliponase alfa, also known as Brineura, as a treatment for CLN2. This is a dreadful blow to all those with children on treatment,…
    BDFA
  • We are pleased to announce that we are now a proud member of the Disabled Children’s Partnership February 3, 2019
    We are a proud member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children, young people and their families in England. We know that…
    BDFA

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