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.