Liz Sanson is the Family Support Coordinator for BDSRA Australia. Liz has been part of the Batten disease community for 7 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 her deep knowledge and wealth 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.
Dementia Support Australia (DSA) is an Australian government-funded service led by HammondCare, specialising in behaviour support for all Australians living with a form of dementia, including childhood dementias.
DSA and BDSRA Australia work together to provide free, individually-tailored support to children affected by Batten disease, their families and carer networks. DSA, with the ongoing support of BDSRA Australia, has a specialised team of consultants who understand Batten disease and childhood dementia, and its impact on patients, carers and families. Consultants are able to provide timely, professional and pragmatic support to families through detailed assessments (typically on-site), and provision and assisted implementation of recommendations and management strategies.
BDSRA Australia highly recommends this support service, and encourages any family dealing with Batten disease-related behavioural issues to reach out to the service.
No referral needed. Simply call our 24-hour helpline on 1800 699 799, fill out the contact form or chat with us online. To learn more, visit the DSA Childhood Dementia Support page.
“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 Batten disease and childhood dementia, I can see how clearly relevant this support is to us.”
Mother of child with CLN2 disease
"The practical support and recommendations DSA have provided have been so valuable. The DSA consultant was compassionate and personable, and helped us look at our daughter’s needs through a ‘dementia lens’. With the consultant’s recommended management plan, we were able to make a few changes in our home and routine, which have made a real difference. Our daughter seems more settled and content.”
Parents of child with CLN3 disease
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 advice on Batten disease management, and also supports BDSRA Australia’s research, education and awareness-raising efforts. You can read more about the Advisory Board members here.
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.
Below are some useful, reputable resources that help explain the clinical trial process, common clinical trial terms and definitions.
The ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. It lists more than 450,000 research studies in 221 countries.
For a list of current clinical trials and natural history studies in Batten disease (NCL), click on the appropriate link, by NCL subtype, below.
Each list includes studies that are (i) Active (not recruiting); (ii) Recruiting; (iii) Not yet recruiting; and (iv) Enrolling by invitation.
As part of our commitment to providing ongoing education for families, carers and their wider support networks, BDSRA Australia hosts regular ‘Meet the Expert’ webinars. Webinars are open to everyone and include a live presentation by selected guest presenters, followed by informal discussion and Q&A. Past webinar recordings can be accessed below.
To receive notifications about upcoming webinars, you can join our mailing list by emailing info@bdsraaustralia.org
In this practical, interactive discussion, speech pathology experts provide insights into speech and language deficits in Batten disease, and discuss their new ground-breaking research, co-funded by BDSRA Australia, that is currently underway to address these challenges. Learn how you can get involved to improve our understanding of communication in Batten disease, and aid in the development of more effective, targeted speech therapies for affected individuals and their families.
An informative presentation providing practical advice on how service providers can assist families to achieve optimal support management and desired outcomes through their NDIS plan.
In this engaging session you will learn about the physiological basis of stress, how stress impacts our minds and bodies, and some practical, simple steps we can take to help manage and avoid caregiver stress and burnout. Dr Joe Vigil is an experienced professional, a passionate Batten advocate, and a parent who has walked the Batten disease journey.
Join our panel of special guests as we discuss Batten disease, the often-overlooked sibling perspective and the development of an inspiring children’s literature resource Max and Abby. Hear from author, Dr Ineka Whiteman, and keynote presenter Meg Chin, Family Support Specialist as she discusses her PhD research on sibling perspectives, and offers insightful, practical advice to parents.
Hear from our 2021 Research Grant recipients, presenting their latest research in easy-to-follow presentations, followed by Q&A.
An informative presentation from a leading paediatric pain specialist, providing practical advice on pain management in complex neurological conditions like Batten disease
Recording link will be provided upon request. Please email info@bdsraaustralia.org for access.
Learn about the latest news and updates in Batten disease clinical trials and natural history studies.
Help us bounce to raise awareness for International Batten Disease Aware Day on Sunday 9th June 2024. For further information
Peta Murchison; TEDx, Sydney Opera House 2016
Peta Murchison founded Bounce4Batten in 2014 after her daughter Mia was diagnosed with CLN2 Batten disease. She has been an advocate for positive change for rare disease and inclusive education. Peta received a standing ovation at the Sydney Opera House for her inspirational TEDx talk in 2016. You can watch it here.
Other parents and families impacted by Batten disease are often a wonderful – and indispensable - source of support, advice and information. Connecting with other families who truly understand the Batten journey and who just “get it”, can be reassuring. Here are just some ways BDSRA Australia can help you connect:
There are private Facebook groups dedicated to families affected by Batten disease, and most subtypes also have their own closed groups too. Parents and carers from around the world use these forums to share experiences, seek and offer practical support, and to ask questions on a wide range of topics. We recommend the following closed/private Facebook groups as a helpful start. Note, you will need to ‘request’ to be added these closed groups:
- Australian parents/carers Facebook group: Battling Battens Down Under
- International parents/carers Facebook group: Batten Disease (BDSRA official group)
And be sure to follow us on our public page BDSRA Australia for updates on support and research news, events and more:
- Facebook: BDSRA Australia
- Instagram: bdsra_australia
- Linkedin: Batten Disease Support & Research Association (BDSRA) Australia
BDSRA Australia hosts regular online meet ups via zoom. Join us for a relaxed chat, an opportunity to meet other parents from around Australia and NZ, to discuss topics raised by attendees. Occasionally we invite guest speakers to share their expertise on topics of particular interest to our families. For further information reach out to Liz, our Family Support Officer on support@bdsraaustralia.org
One of our flagship events at BDSRA Australia is our in-person Family Retreat.
Generally held every two years, this 2-day conference brings together Batten families, clinicians, researchers and industry partners from all over Australia (and sometimes NZ!). Parents and carers enjoy educational sessions and social events, while the kids are treated to their very own program filled with fun and adventure for all.
Our most recent Family Retreat was held in Sydney in November 2022. To see all the fun and memorable moments, catch the weekend’s ‘highlights reel’ here!
To ensure you’re kept up-to-date with our latest research, educational and social events, you can sign up to our mailing list by emailing Nikki at info@bdsraaustralia.org
Music can play a unique role in enriching the lives of children and young people with Batten disease.
Until recently there has been little academic, evidence-based research in this highly specialised field of disability. A three-year research project undertaken by the Applied Music Research Centre at the University of Roehampton (UK) set out to influence educational and therapeutic practice in the field of Batten disease and beyond. Published in 2021, this work has helped forge an innovative approach that sees music as an indispensable element in the lives and education of people with complex needs.
This research is the first to address the potential role of music in enhancing the quality of life of children and young people with Batten disease, which causes childhood dementia, in a systematic way. The findings have significant implications for families living with Batten disease by offering strategies to their therapists, teachers and families that will permit them to sustain communication when words alone no longer function, to give children and young people a medium through which to articulate their feelings when other channels of emotional expression are occluded, to enable memories to be accessed that would otherwise be lost, and, above all, to help maintain a sense of well-being in an increasingly confusing and frightening inner world.
Reproductive carrier screening is a genetic test that provides information about the chance of having a child with a severe inherited genetic condition, like Batten disease. The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) and the Royal Australian College of General Practitioners (RACGP) recommend that all couples planning or in the first trimester of a pregnancy be informed about the availability of carrier screening.
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.
Although not all families affected by Batten disease will choose to have a feeding tube for their affected child/loved one, many families opt for this medical device to circumvent feeding and swallowing difficulties to provide fluids, nutrition and/or medication.
Do you have questions about feeding tubes? Have you ever wondered if this is the right option for your child/loved one? Is this something that a family member or friend has and are interested in finding out more about it?
These resources offer further information and guidance:
ChildFeeding.org - an Australian site for parents and carers of children with complex feeding difficulties.
Told through the eyes of big sister Abby, Max and Abby shines a gentle light on the challenging topic of Batten disease, childhood dementia and disability, revealing the highs and lows of life as a sibling of a child with additional needs. Learn more here.
The YCN is a nationally coordinated resource to raise young carer awareness, provide information and direct young carers to appropriate pathways for support. See https://youngcarersnetwork.com.au/
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 (newborn to 18 yrs) with life-limiting illnesses who are not expected to reach adulthood. Hospices assist children and their families to deal with the myriad of ongoing physical and emotional challenges they face, and offer medical care, holistic support, respite and end-of-life care.
Having access to a hospice is an important aspect of holistic care, and enables families to focus on the important things, such as spending quality time together and making every moment count.
Hospice and respite care can be provided throughout the course of a child or young person’s life, and beyond. Families are strongly encouraged to engage with these services early – as soon after diagnosis as you feel comfortable.
In Australia, there are currently three children’s hospices:
In 2025, Perth Children's Hospital in WA is expecting to open its brand-new Children’s Hospice. You can read more here
Australia’s first dedicated service for young people with life-limiting illness was opened in Sydney in February 2023; Manly Adolescent and Young Adult Hospice (AYAH). The Manly Adolescent and Young Adult Hospice - Northern Sydney Local Health District is for 15 to 24-year-old patients with life-limiting illness and offers respite care, symptom management, end-of-life care, and care coordination support in the transition from children’s to adult services.
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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. |
| Organisation | Help | Contact |
|---|---|---|
| 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 |
| Australian Centre for Grief and Bereavement - www.grief.org.au | Phone: (03) 9265 2100 or 1800 642 066 |
| National Centre for Childhood Grief - www.childhoodgrief.org.au | Phone: 1300 654 556 |