Liz Sanson is the Family Support Coordinator for BDSRA Australia. Liz has been part of the Batten disease community for 5 years. Her Batten angel, Matilda, will be forever 9.
Liz has spent years providing care, finding support, navigating the NDIS, problem solving in the disability space, and riding the emotional roller-coaster of Batten disease. She is now using the world of experience she has gained to help other families on this journey. Liz has a huge belief in peer and community support and care. She is approachable and she ‘gets it’. She is a great source of information, support and practical advice. Liz says, “Don’t battle it alone, reach out – I am here for you. Nothing is too small, even if it's only to share your frustrations and worries or for a listening ear."
Please contact Liz at support@bdsraaustralia.org.
BDSRA Australia and Dementia Support Australia, an Australian government-funded national partnership led by HammondCare, work together to provide personally tailored support to families with children affected by Batten disease, a childhood dementia. Dementia Support Australia, with ongoing support of BDSRA Australia, has a team of specialised, trained consultants who understand Batten disease, its impact on patients, carers and families, and who are able to provide timely, professional and pragmatic support to families affected by this form of childhood dementia and related behaviours.
“I never really thought of my child as having ‘dementia’, but now that I have learned more about it and the behaviours and challenges that come with childhood dementia, I can see how clearly relevant this is to us. I want to know more about how we can better manage the dementia aspects of her illness.”
Mother of child with CLN2 disease
Other families impacted by Batten disease can provide a great source of support and information. There are private Facebook groups dedicated to most forms of Batten disease. Parents and carers from around the world use these forums to share experiences and practical support and to ask questions. BDSRA Australia hosts family events throughout the year. Contact us for more information or to be included on the national patient register.
The BDSRA Australia library catalogue () lists publications about Batten disease and information for families, carers and teachers. Please contact us to obtain access to publications listed in our library catalogue.
BDSRA Australia's Medical and Scientific Advisory Board, is comprised of leading medical and allied health experts with experience in diagnosis, treatment and management of Batten disease. The Advisory Board is a resource for other healthcare practitioners seeking information and advice on Batten disease.
This downloadable resource () provides links to useful information on the clinical trial process, understanding key clinical trial terms and definitions and how to stay up-to-date on latest clinical trial news.
This short video tutorial provides an easy step-by-step guide to accessing and searching the global clinical trial database 'clinicaltrials.gov' for information on studies that are currently open and recruiting patients, and those that will soon be open and recruiting.
Presented by Dr Ineka Whiteman, Head of Medical & Scientific Affairs and Head of Research at BDSRA Australia.
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Carer payment |
An income support payment if you provide constant care to someone who has a severe disability, illness, or an adult who is frail and aged. To be eligible for Carer Payment you must be under the Pension Income and Assets Test limits. |
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Carer allowance |
A fortnightly supplement if you provide additional daily care to someone who has a disability, serious illness, or is frail and aged. To be eligible for Carer Allowance your and your partner’s combined adjusted taxable income must be under $250,000 a year. |
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Carer adjustment payment |
A one-off payment if your child under seven suffers a severe illness or has a major disability. |
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Essential medical equipment payment |
A yearly payment to help with energy costs to run medical equipment or medically required heating or cooling. |
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Disability support pension |
If your child is over 16, they may be eligible for the Disability Support Pension. |
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Bereavement payment |
A lump sum or short term payment when your child or the person you were caring for has died. |
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NDIS |
The National Disability Insurance Scheme (NDIS) provides support to eligible people with intellectual, physical, sensory, cognitive and psychosocial disability. Early intervention supports can also be provided for children with developmental delay. Find more information about NDIS. |
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Australian disability parking scheme |
The Australian disability parking scheme includes an Australian disability parking permit, which is recognised nationally. It also establishes nationally consistent eligibility criteria and national minimum parking concessions to help reduce the barriers for permit holders when travelling interstate. |
Paediatric palliative care enables your baby, child or young adult to live in an environment where treatment can be part of their life, but not their entire focus. It aims to provide the best quality of life through a holistic approach to care which supports the physical, emotional, social and spiritual aspects of the child and their family. Find out more about palliative care.
Children’s hospice services help children with life-limiting illnesses who are not expected to reach adulthood. The hospices assist these children and their families deal with the emotional and physical challenges they face and to make the most of life. This care can be provided throughout the course of a child or young person’s life and beyond. There are three children’s hospices in Australia.
| Organisation | Help | Contact |
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| Beyond Blue | 24 hour support for anxiety, depression and suicide prevention. |
Phone: 1300 22 4636 Web Site |
| Brainwave |
Financial and practical assistance and emotional support to children with neurological conditions. |
Phone: 1300 766 819 03 9536 5600 Web Site |
| Carers’ Australia (and Carers’ Associations in each state and territory) |
Carer support, including information about local respite or activities for your child or person you care for. |
Phone: 1800 242 636 Web Site For carer support in your state or territory see: NSW, VIC, QLD, SA NT, WA, ACT, TAS |
| Carer Gateway |
Information on support services available to carers, including access to counselling, connecting to other carers, skill development and coaching, as well as information on accessing respite. |
Web Site |
| Children’s Hospital Foundation (QLD only) | Improving hospital experience for sick kids and their families. | Web Site |
| Dementia Support Australia | Professional and pragmatic support to families affected by Batten disease, a childhood dementia. |
Phone: 1800 699 799 and ask to speak to a Batten disease-trained consultant. Web Site |
| Dementia Australia | Advice and information about dementia, including National Dementia Helpline. |
Phone: 1800 100 500 Web Site |
| Lifeline | 24 Hour crisis support. |
Phone: 13 11 14 (If life is in danger call 000). Web Site |
| Little Heroes Foundation (SA and NT only) | Supports the unmet needs of children and their families in their life after diagnosis of paediatric rare serious illnesses. | Web Site |
| Little Windmills | Supports seriously ill children from remote, regional and rural Australia. | Web Site |
| Make A Wish Australia | Makes children’s wishes come true. | Web Site |
| Ronald McDonald House Charities | Keeps families of seriously ill children together and close to the care their child needs. | Web Site |
| Starlight Foundation | Helps sick kids flourish, build resilience and shape their individuality. | Web Site |
| Steve Waugh Foundation | Offers financial support through individual grants to children and young adults with the rarest diseases. | Web Site |
| SWAN (Syndromes Without A Name) | Information and peer-to-peer Support for families who have a child with an undiagnosed or rare genetic condition, including Batten disease. | Web Site |
| TLC for Kids | Practical and emotional support for sick kids, both in and out of hospital. TLC ambulance creates special moments for children in palliative care. | Web Site |
| Vision Australia | Services and support to those who are blind or have low vision. | Web Site |
| Variety the Children’s Charity | Financial grants, programs and events to support children living with special needs. | Web Site |
'The potential role of music to enhance the lives of children and young people with NCL (Batten disease)'. This downloadable report is the result of a 3-year research project undertaken by the Applied Music Research Centre at the University of Roehampton (UK), investigating the potential role of music to enhance the lives of children and young people with Batten disease.
With acknowledgement and thanks to the authors and University of Roehampton (UK) for permitting the use of this resource.
People living with Batten disease may have difficulty doing things that many people do with ease, such as walking, using a toilet, or writing with a pen or pencil. Fortunately, physical therapists and occupational therapists can guide patients to equipment that may bring more independence. There are adaptive products specifically designed to benefit people with disabilities, and accessible products, designed to make everyday living situations just that more accessible.
A range of adaptive devices and equipment is available for those living with Batten disease, some of which are listed in this resource.
With acknowledgement and thanks to Neurogene Inc. for permitting the reproduction of this resource.