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Latest News

Say a Fable to Raise Awareness for Batten Disease

RSS Updates from the Batten Community

  • BDSRA SELECTS AMY FENTON PARKER AS NEW EXECUTIVE DIRECTOR January 26, 2021
    FOR IMMEDIATE RELEASE January 25, 2021 BDSRA SELECTS AMY FENTON PARKER AS NEW EXECUTIVE DIRECTOR Batten Disease Support and Research Association, along with the BDSRA Board of Directors, is pleased to announce the selection of a new Executive Director to further their vision of accelerating science and providing vital family support services. The hiring of […]
    Noreen Murphy
  • September Illuminator is here! October 9, 2020
    Click here to see the Illuminator!   The post September Illuminator is here! appeared first on Batten Disease Support & Research Association.
    Noreen Murphy
  • July Illuminator Newsletter is Here! October 8, 2020
    Check out the July Newsletter! Read all about the 2020 Virtual BDSRA Conference and upcoming research opportunities. View is here, https://conta.cc/3gkQqnb. The post July Illuminator Newsletter is Here! appeared first on Batten Disease Support & Research Association.
    Noreen Murphy

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

  • New Head of Fundraising, welcome Liz Brownnutt January 18, 2021
    The BDFA team is delighted to announce that Liz Brownnutt, our new Head of Fundraising starts today. This is a key appointment as the charity moves to diversity its income and build a sustainable future, offering the very best we…
    BDFA
  • Untitled December 21, 2020
    We wanted to wish everyone in the Batten community a very Merry Christmas and a Happy New Year! Our office is closed from tomorrow, Tuesday 22nd Dec till Monday 4th January. Sending you all Christmas wishes, The BDFA Team Amanda,…
    BDFA
  • The Amber Trust launches major new music service, With Music In Mind in association with the Amber Trust November 6, 2020
    With Music in Mind by Amber Trust Monday 16 November 4-5pm With Music in Mind is The Amber Trust’s pioneering new music service for families who have a visually impaired child with neurodegenerative disease, such as Batten disease. This webinar…
    BDFA

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Theodore's Miracle