Library
We have a library which holds an extensive range of information on Leukodystrophy.
We also have for members a selection of printed information packs which can be sent out on request and we also offer an information pamphlet, videos for loan and books of stories about people and families who have or are living with a Leukodystrophy illness.
Our library currently holds
- Scientific resource material – Journal of Child Neurology September 2003: ‘Leukodystrophies’ (4 copies)
- Centre for Childhood White Matter Disorders – Known & Unclassified White Matter Disorders (7 copies)
- Book of Stories – 3rd Edition: As It Is, Those Touched by Leukodystrophy and 4th Edition: Remembering, Those Touched by Leukodystrophy . Both books contain personal stories of families at the time of their diagnosis and beyond. They are inspirational stories of courage and love.
- There's No Such Thing As A Silly Question. A practical guide for families living with child with chronic illness, disability, mental illness or a life threatening condition. Published by Very Special Kids in partnership with the Gandel Charitable Trust. (6 copies)
- Siblings. A book written by Kate Strohm for brothers and sisters of children with special needs. Professor Graham Vimpani wrote "This book should be read by anyone coming into contact with a family that includes a child with a disability".
- Up to date editions of newsletters from:
- Very Special Kids
- Association for Children with a Disability and National Association for Children with a Disability
- Palliative Care Australia
- Self Help Queensland
- United Leukodystrophy Foundation
- Carers Victoria
- Association of Genetic Support of Australia
- Books relating to spirituality and coping with grief:
- Man’s Search for Meaning by Viktor E Frankl
- Something I’ve Never Felt Before (how teenagers cope with grief) by Doris Zagdanski
- The Dance of Anger (an exploration of women’s anger) by Harriet Goldhor Lerner PhD.
- DVD's & Videos
- Lorenzo's Oil (DVD)
- Sharing Our Story (Video produced by Association for Children with a Disability). Parents of children with a disability talk about their lives.
- The Carer (Video made in association with the Department of Human Services). Caring for someone suffering from Alzheimers Disease. Staring Charles "Bud" Tingwell.
- Depression In Men (I'm all right mate) (Video produced by Pfizer)
- Coming Out of the Wilderness (depression in women) (Video)
- What You Really Need to Know About Stress (Video)
- ALDS Medical Seminars
- 2007 - Dr Raphael Schiffman - VWM/CACH and Finding a Diagnosis for the Leukodystrophies.
- 2007 - Dr Andrew Churchyard - AMN & Men's Health
- 2007 - Andrea Murphy (Very Special Kids) - Supporting Families Who Have a Child with a Life Threatening Illness
- 2007 - Dr Bronwyn Morkham - Young People in Nursing Homes
- 2007 - Jane Yates (ALDS Parent) - Life Is A Long Term Plan
- 2004 - Professor Jaap Valk - White Matter Disorders in Children: Images, Patterns & Beyond and The Might & Mystery of MRI's for Mums, Dads & Medicos for Unclassified White Matter Disorders.
- 2004 - Dr Andrew Kornberg - Neurological Issues Associated with the Leukodystrophies
- 2004 - Dr Michael Fahey - Leukodystrophy Diagnoses in 2004: A Genetics Perspective and The Role of Doctors in Supporting Families & Providing Assistance
- 2004 - Carol Quayle - What Does Palliative Care Mean for Leukodystrophy Families
- 2004 - Margaret Sahhar (Social Worker) - Resources & How Best to Use Them
- 2004 - Peter Phillips (Parent) - The Parent/Carer Perspective on Accessing Support & Resources
- 2002 - Dr Seyed Ali Fatemi - AMN Research Update for AMN Patients & ALD Carriers and Radiologic Findings in AMN & ALD Heterozygotes
- 2002 - Dr Martin Delatycki and Dr Andrew Churchyard - Background & Overview of AMN
- 2002 - Dr Mark Walterfang - Diagnosis & Management of Psychiatric Phenomena Associated with AMN
- 2002 - Professor Elsdon Storey - Neurological & Neuropsychological Assessment in the Management of AMN Patients
- 2002 - Dr Avihu Boneh - Australian Simvastatin Trial for Adults Affected by AMN
- Transcripts, videos and DVDs of previous ALDS Annual General Meetings, including guest-speaker notes from those meetings
To borrow an item , simply contact us and we’ll get it out to you (Australia & NZ only).