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27 June 2021

Thinking about giving your hard earned money to a charity close to your heart rather than the tax man? In 2020/2021, BDSRA Australia:

  • – Established, and provided the training for, the childhood dementia support services provided by Dementia Support Australia;
  • – Gave away just shy of $180,000 for local batten disease research;
  • – Engaged a family support officer to provide practical advice and support to all our families;
  • – continued to engage a head of research, science and medical affairs, including to ensure our families have a point of contact to discuss the most up to date research and potential therapies;
  • – Had regular ‘zoom’ family catch-ups and ‘Meet the Expert’ events;
  • – Advocated hard for upcoming clinical trials for CLN3, CLN2 and CLN1 to occur in Australia; and
  • – Will be holding the first family retreat in 5 years in November, which is free for families.

We are about action. Keep our good work happening. Donate here: