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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

  • #GivingTuesdayNow April 30, 2020
    We live in an exciting and sometimes unpredictable world, but there is often a silver lining; we’ve taken the time to consider what’s truly important to us. At BDSRA, helping others is what’s important. #GivingTuesdayNow was created by the #GivingTuesday movement in response to the current pandemic as a way to help our various philanthropies […]
    Noreen Murphy
  • BDSRA Store Purchase Fulfillment Delayed March 27, 2020
    BDSRA will continue accepting BDSRA Store orders but due to social distancing fulfillment of these orders will be delayed. Thank you for your understanding. The post BDSRA Store Purchase Fulfillment Delayed appeared first on Batten Disease Support & Research Association.
    Noreen Murphy
  • The latest issue of the newsletter is now available October 29, 2019
    The latest issue of the Illuminator is here. Click here to read about Rare Disease Week, Global Genes, Trnds Symposium and more. The post The latest issue of the newsletter is now available appeared first on Batten Disease Support & Research Association.
    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

  • Gail’s story June 13, 2020
    “Jessica is living proof that early diagnosis and treatment can change the course of this dreadful disease” Sisters, Nicole and Jessica both have CLN2, and their mother, Gail Rich explains the importance of diagnosing and treating Batten disease early on.\…
    BDFA
  • Consultant Paediatric Neurologist, Ruth Williams’ Story June 13, 2020
    “We are not at the end of the journey yet… but compared with 30 years ago, it’s a whole new and brighter place to be” Consultant Paediatric Neurologist, Ruth Williams, talks of the huge progress made from the 1980s to…
    BDFA
  • Hannah’s Story June 13, 2020
    “Hannah was happier than any of us… and whether or not she was upset or scared, she never let it show. She was a really strong girl” Liv Batterbee, speaks of family life with her sister Hannah, who lived with…
    BDFA

Theodore's Miracle