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June 2019 Jun 2019

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June 2019 Jun 2019

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

  • June issue of the Illuminator newsletter June 21, 2019
    The newsletter is here! Click here to read the latest issue. (Read More) The post June issue of the Illuminator newsletter appeared first on Batten Disease Support & Research Association.
    tkirby
  • BDSRA Virtual 5K May 17, 2019
          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, […]
    tkirby
  • BDSRA Memorial May 9, 2019
    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 […]
    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

  • Scientific Officer Update June 18, 2019
    We are very sorry to announce that our Scientific Officer, Heather Band, left the BDFA on 7th June 2019 after almost seven years with the organisation. We thank Heather for her professionalism, dedication and all her hard work on many…
    BDFA
  • Materials for Awareness Day 2019 June 4, 2019
    Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day; thank you for all your support. We have put together…
    BDFA
  • CLN1 Family Survey June 3, 2019
    This survey was developed by a US-based CLN1 family advocacy group, Taylor’s Tale, as an important part of an international project to better understand and advance CLN1 disease clinical care. All answers will be kept confidential and anonymous. Summary results…
    BDFA

Theodore's Miracle