Information Service
Here are some very useful documents you can download, for people seeking information on specific subjects relating to Cystic Fibrosis
Nutrition in CF Adults FS_Eating_well_adults_Nov_06_For_web.pdf
Nutrition in Children Eating_well_Children_parents_for_factsheet_Oct_06.pdf
Travel with CF travelguide_2009.pdf
Relationships CF_and_relationships_final_for_web_March_09.pdf
CF and You - a guide for children aged 8 - 12 B_1400CF_You_.pdf kindly supplied by the UK CF Trust
Growing up with CF - a guide for young people 12 - 18 years B_1600Growing_up_with_CF.pdf kindly supplied by the UK Cf Trust
My Mummy has CF B_1800My_Mummy_has_CF.pdf kindly supplied by the UK CF Trust
Cystic Fibrosis Adult Guide Adult_Booklet.pdf
The following are available on loan from the Association's National Office for 4 weeks:
» Stories of Life Experiences - Books
Courage
Nicola (four copies)
Silent fighters
The Meaning of My Life
Little Brave Ones - A photo tribute to little ones with CF
Inner Strength - One family's journey with CF
Monty - a story about CF for the very young
Purpose - The Inspirational Story of Aaron Fleming's Ironman journey
Breathing for a Living
Going the Distance - The Inspirational Story of one mother's date with destiny at Ironman 2004
Precious Lives
The Spirit of Lo - one ordinary family's extraordinary journey with CF
Mallory's 65 Roses - a children's book about CF
Taking Flight - InspirationalStories of Lung Transplantation
» Practical Guide For CF - Videos and DVDs
A CF Life, college and career choices for CF Adults
Living with the CF Challenge
The Will to live, Meeting the Adult challenges of CF
Grief in the Family
Speaking from Experience - Adults (DVD)
Speaking from Experience - Adolescence (DVD)
Speaking form Experience - Newly Diagnosed (DVD)
A Journey through the Digestive System for Kids with CF (DVD)
Back to School for Teens (DVD)
Fitting CF into your Life for Children (DVD)
» Practical guides on Cystic Fibrosis - Books
CF & You, Dietary & Physiotherapy
CF Guide for Parents
CF The Facts- Harris & Super (two copies)
CF worldwide newsletter (four copies)
Escape the Pain - Oliver Gillie
Going to hospital for young children - CDHB
Good if not great living with lung disease - Phil Petersen
Meeting special education needs at school - Special Education Resources
Nutritional Management of CF - D.Stableforth
Nutrition for the Adult with CF - Macdonald/Littlewood
Nutritional Management - CF Trust
Pathfinder He Aratohu - Special needs book
The Physical Treatment of CF - Royal Brompton Hospital UK
Growing Older with CF
Growing Up with CF
Fat and Loving it - practical guide to nutrition with recipes
Charity and Legal Gazette
Supporting Families with CF - Family and Social Functioning
Managing Chronic Illness - Reclaim Health and Wellbeing - Vernonica Latham
Taking CF to School
Amanda's Rainbow
The Rainbow House
The Respiratory System
A Path Less Conventional - a journey through alternative treatment for CF
National and International CF newsletters
» Dealing with Tough Times
Bereavement, help for the family who have lost a child to CF - Dr Janet Goddall
Helping the Hurt, how to understand & help grieving children and teenagers - Lois Tonkin
After your child has Died
In the Shadow of Illness - A book for Parents and Siblings of a Chronically Ill Child
The Journey Through - a Youth Handbook for Facing Tough Times of Loss and Grief (2 copies)
The Challenge of Change
Understanding the Losses Children and Young People face and how to help
He'll be OK - Growing goregous boys into good men
When Tough Stuff Happens - An Activity book for tough times for 7 - 12 year olds
The Anger Toolbox - Tools for parents and carers to help young people through angry times
Don't Sweat the small stuff for teens - Simple ways to keep your cool in stressful times
Oh Brother - growing up with a special needs sibling
Raising Girls
» Lung Transplantation
Organ Transplants - A survival guide fo the entire family
Beyond Lungs
The Lung Transplant Handbook
» IVF and Fertility
Nurturing Yourself through IVF - Improve your experience and maximise your odds of success
The Infertility Survival Handbook - everything you never thought you'd need to know
What they don't tell you, a young persons guide to sexual & reproductive health issues - Roche
» Life Stories - videos
65 Roses for L J Hooker
AC & the awesome E's
Alex, life of a CF child
Inside Out featuring Paul O'Harroran
Speaking from experience, DVDs
Wolverines message and 65 Roses
Simply Great - DVD
An Abbreviated Life - Sarah Hitchings Documentary on DVD
Medical Information on CF - books
Breakthrough - Harry Schwartz
Fertility, Pregnancy & Conception in CF - CF Research
Heart/Lung transplants for Patients with CF - 1990
Prenatal Diagnosis -NSW Genetics
Respiratory Care - BA Webber
Royal Commission of Genetic Modification (1) (two copies)
Royal Commission on Genetic Modification (2)
Genetics UK Trust
CF Physiotherapy - UK Trust
Nutrition - UK Trust
Burkholderia Cepacia - UK Trust
Nutritional Management in CF - UK Trust
Cozmore Insulin Pumps - Smiths Medical
Living with Diabetes and Insulin - Diabetes NZ Handbook
Cystic Fibrosis - the Facts - Ann Harris and Maurice Super
CF Australia - Infection Control Guidelines for CF Parents and Carers
Starship Clinical Guidelines for the care of Children with CF
Insulin Pumps Brochures
The Bell Curve - Article from New Yorker by Dr Atul Gawande
Genetics Resource Book
Disorders of the Pancreas - nutrition brochure
Choosing genes for Future Children
Journal of CF Guidelins fort he Management of Pregnancy in Women with CF
» Medical - videos
Prenatal Diagnosis, towards making an informed decision - New Genetics education programme
Stem Cell Research & its implications for CF - by Dr Richard Mollard
Frontline - 1990 CF Genetics
The Eflow Story (DVD)
CF and the Usage of Pulmozyme
Current treatment Objectives (DVD)
The Treatment Spectrum of CF: From therapeutic challenges to Innovative Care (DVD)
Action Guide for Accelerating Improvment in CF Care (DVD and Book)
» Cystic Fibrosis Tape Library List - videos various
CF Awareness Promotion
Dennis Warmington CF Interview
2006 North American CF Conference (8 DVD set)
Official Abstracts from the 30th European CF Conference Turkey 2007
Abstracts of the 31st European Conference Prague 2008
» Cystic Fibrosis CD Library List
65 Roses - Wolverines
Report of the Royal Commission on Genetic Modification
The Official Crusaders Theme
The Ultimate Garage Sale 2001
» National Conference Video Tapes
Year 2000 | |
| Tape 1 | Aspirations: Fertility options; Transition from Paediatric to Respiratory: Lung Transplant |
| Tape 2 | Coping with and supporting: More aspirations: New Research strategies: Molecular Genetics |
| Tape 3 | CF sheep and research on Pseudomonas; Infection control: New Creon; Treatment of chest infections |
Year 2001 | |
| Tape 1 | Travel with CF: Use of Pulmozyme in NZ infection control; my life with new lungs-2 years on |
| Tape 2 | Fertility issues; genetic counselling |
| Tape 3 | Burkholderia Cepacia; Exercise: Bronchoscopy; Asthma and CF |
Year 2002 | |
| Tape 1 | The benefits of exercise ; My role with Cfers and the Transplant team; Second wind by S Ashby; CFRD; CARD - The Greenland experience by L Thrift |
| Tape 2 | New developments in correcting/compensating for the basic defect in CFt; Exercise testing in CF,; Parenting with CF - Dealing with chronic sorrow ; Association support for people with CF |
| Tape 3 | Airway inflammation; Is chlorine bleach produced in the lungs of CF children?; The impact on CF siblings:The Australasian CF registry; Liver disease in CF |
Year 2003 | |
| Tape 1 | Rights and responsibilities; reproduction and pregnancy cf fertility treatment panel; art of having a positive attitude |
| Tape 2 | Are you getting all you deserve; a different approach to well-being growth hormone and insulin therapy; white blood cells and cf |
| Tape 3 | Quality of life issues; young people with CF; Myths and Morals and the moratorium; potential risks of GM technology SLPI and Elafin |
| Tape 4 | My experience with Reiki; Aussie Cf registry; Ask the team; genetic testing for CF |
Year 2004 | |
| Tape 1 | Role of nutrition in lung transplant; idea of a transplant |
| Tape 2 | what I hate about cf and how I overcame it; accomplish Supported Employment |
| Tape 3 | Role of Parents in Cf Adult care; Early Intervention; PGD |
| Tape 4 | How Siblings cope with Cf; Strong Parents Strong Children; Azythromycin |
| Tape 5 | Pegs,ports and pics; Hospital in the Home; Potatoes, Prunes and Garlic- keeping well; issues facing the Cf community today |
Year 2005 (also available in DVD) | |
| Tape 1 | People Don't See CF, Gastrostomies, Core Stability, Pregnancy and CF, Planning for Life |
| Tape 2 | Communication with Health Professionals, Bridging the Gap, Living with Uncertainty |
| Tape 3 | Aerosol Research, CFRD, Hospital Fun, Ask the Team |
| Tape 4 | Adolescence and CF, Research Update |
| Year 2006 | (DVD only) |
| DVD 1 | Financial Assistance, Brittle Bones, Glucose Monitoring in CFRD, New Lungs part 1 |
| DVD 2 | New Lungs part 2, Hypertonic Saline for CF, Stem Cell Research and cord blood as new therapy |
| DVD 3 | Research Influencing Practice, Chronic Illness in Young People, Coping with lots of Hospital Admissions |
| DVD 1 | Healthy Thinking, Physiotherapy technicques and Devices, Ask the Team |
| Year 2007 | (DVD Only) |
| DVD 1 | CFRD Self Care, Nutrition in CF |
| DVD 2 | Advances in Medication, Fertility Treatment, Building Resilience |
| DVD 3 | Research Study Report, Stem Cell/ Cord Blood, Pre-implantation Genetic Diagnosis |
| DVD 4 | Nutrition, Needle Phobia, Answering Tough Questions |
| DVD 5 | USA Conference Report, Hospital Transition |
| Year 2008 | (DVD Only - one DVD for each presentation) |
| 1 | Mucous, Microbes and Mysteries Part One - Pseudomonas Aeruginosa |
| 2 | Mucous, Microbes and Mysteries Part two - Other Bugs |
| 3 | Barriers to treatment Adherence and Strategies to improve it |
| 4 | Building Sibling Resilience Purple Soup |
| 5 | CF doesn't come with an instruction manual |
| 6 | How to I get them to eat without ruining dinner? Part One - Dr Lori Stark |
| 7 | How do I get them to eat without ruining dinner? Part Two - Dr Lori Stark |
| 8 | Pegs, Ports and Piccs |
| 9 | Promoting Dietary Adherence for Children with CF - Dr Lori Stark |
| 10 | So you dont think physio is important? |
| 11 | So you have CF and want a baby? Where to from here? |
| 12 | The value of play therapy |
| 13 | Optimising your health at work and at play |
Year 2009
Disk Sexuality and Reproductive Issues in CF - Anna Tsang, St Michaels Hospital, Toronto
Disk 1 Research Update on Alginase - Professor Bob Elliott, Annual Assessment for Children with CF - Dr Cass Byrnes, Paediatrician Starship Hospital, Tripping Around travelling with kids with CF - Susan Biggar, Parent, Melbourne
Disk 2 My Epic Transplant Journey - Jonathon Fowler, Inhalation therapy and Physiotherapy - Rebecca Scoones Physiotherapist, Starship Hospital, Patient and Family Centred Care - does it matter? - Susan Biggar
Disk 3 From Active Manager to Coach Mentor - promoting independence in young adults - Dr Mark O'Carroll, Adult Specialist Auckland Hospital, When tough stuff happens - Tricia Irving-Hendry Skylight Foundation
Disk 4 The Bronchealveolar Lavage Study - Dr Cass Byrnes Paediatrician Starship Hospital, Medical technology - how does it impact on families of children with CF? - Catherine Lambe Social Worker Starship Hospital, CF - What do teenagers really know? - Jan Tate CF Nurse Specialist, Starship Hospital
Disk 5 Practical Management of CFRD - Anna Tsang Nurse Specialist St Michaels Hospital, Toronto, Antibiotics - is overuse a problem in CF? - Dr Mark O' Carroll Adult Specialist Auckland Hospital
Disk 6 Infection Control - protecting your kids without going over the top - Panel Discussion
» Promotional Items and Governance Resources
Wolverines Video
65 Roses for LJH
TVNZ Inside Out featuring Paul O'Halloran
Evaluating and Monitoring your projects
Employment Agreements for Community Groups
Working in Groups
Conflict Management
Governance and Management
CFANZ Brochure - Cystic Fibrosis - an Explanation
CFANZ Brochure - The Cystic Fibrosis Association
CFANZ Brochure - Hygiene Guidelines
CFANZ Brochure - Teachers Guide to Supporting students with CF
CFANZ Brochure - Adult Guide
CFANZ Booklet - Parent Guide
Building Great Committees
Back issues of the CF News are also available from the National Office.
