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Latest News

Say a Fable to Raise Awareness for Batten Disease

RSS Updates from the Batten Community

  • REGENXBIO Inc. Update for the CLN2 Community May 6, 2021
      Click here to see full PDF Message to CLN2 community vF 5May2021 The post REGENXBIO Inc. Update for the CLN2 Community appeared first on Batten Disease Support & Research Association.
    Morgan Deboth
  • Your April 2021Newletter is Here April 29, 2021
    Click here for the April Illuminator. The post Your April 2021Newletter is Here appeared first on Batten Disease Support & Research Association.
    Morgan Deboth
  • BDSRA Supports Newborn Screening in Ohio HB110 April 19, 2021
    State Representative Scott Oelslager, Chair Ohio House Finance Committee Ohio House of Representatives 77 South High Street Columbus, Ohio 45215   April 19, 2021   CC Members, Ohio House Finance Committee,   My name is Morgan DeBoth and I serve as the Director for Family Support at Batten Disease Support and Research association, BDSRA. We […]
    Morgan Deboth

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

  • HAVE YOU SIGNED UP YET? ‘13 in whatever way to raise 13k for Awareness Day April 20, 2021
    HAVE YOU SIGNED UP YET???? ‘13 in whatever way to raise 13k for Awareness Day ’We have launched an exciting fundraising event for Awareness Day to raise much-needed funds for the BDFA. It is an event that we hope the…
    BDFA
  • International Batten Disease Awareness Day News 2021 April 6, 2021
    The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…
    BDFA
  • National Day of Reflection 2021 March 23, 2021
    National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…
    BDFA

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