Family Register

Are you interested in hearing more about ongoing research? Do you want to be informed of upcoming clinical trial/study opportunities?

BDSRA Australia’s Family Register is an important way for us to keep you informed of clinical and scientific research developments in a timely way.

The Register also enables BDSRA Australia to better understand Batten disease in our region, its prevalence, different subtypes and geographical distribution. It also helps us tailor our education and support activities according to the needs of our current and bereaved families.

If you are a parent or legal guardian of someone with Batten disease, and live in Australia or New Zealand, you may sign up to be on our Family Register by completing our short online form via the link below. It only takes a 2-3 minutes.

BDSRA Australia ensures that information in this register is kept strictly confidential.

Your involvement is entirely voluntary, and you may request to be removed from the list at any time by contacting BDSRA Australia at research@bdsraaustralia.org

Please note, the Family Register is separate from our general ‘Mailing List’. If you would like to be included on the general mailing list only, please email info@bdsraaustralia.org.

Family stories

David

Harry tells his story of healing after the death of his son, David.

Mia

Hamish and Peta share their experiences of grief and resilience following the death of Mia.

Liz, Matilda and family

Matilda lives with her mum Liz, father Jeremy and younger sister Rose in Ermington, NSW. Liz talked to BDRSA in May 2019 about life with Matilda, who has been diagnosed with CLN2.

Julia, Emily and family

Emily lives with her mother, Julia, father Andreas, and older brothers, Benjamin and Alexander in Sydney, NSW. She is legally blind and has juvenile Battens disease, or CLN3. Her mother Julia talked with BDRSA in May 2019 about their lives together.

Fiona, Max and Abigail

Fiona cares for her son Max, who has CLN2 and was 12 years when BDRSA caught up with them. They live on the NSW Central Coast with Max’s younger sister Abigail.

Memorial gallery

These are some of our brave children who lost their lives to Batten Disease. Their childhood was limited, and a battle was endured, but in spite of everything, their smiles continued to shine. If you live in Australia or New Zealand and would like your child to be added to this gallery, please contact us.