| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Brain Tumour Support Organisations |
| American Brain Tumour Association. www.abta.org Provides information and support services, and funds research. Maintains a resource library which can be accessed online, and produces an excellent series of pamphlets on individual tumour types. The ABTA-Kids section provides answers to common questions asked by children about brain tumours and their treatment, and sections of the video "Alex's Journey" can be viewed here. Brain Tumour Action - UK www.braintumouraction.org.uk Produces a series of information pamphlets for patients/families. Offers a "Befrienders" link up programme, is developing a number of paediatric- specific projects. B.r.a.i.nChild www.sickkids.on.ca/brainchild The Brain Tumour Research Assistance & Information Network Is an initiative of Toronto Hospital for Sick Children in Canada. Provides support and advocacy for families of children who receive care from Sick Kids, funds research, and runs community awareness/education initiatives. Brain Tumour Foundation for Children. www.btfcgainc.org Based in Atlanta, Georgia. Supports scientific research, provides family support through various programmes including support groups, activity sessions, symposiums, financial assistance, the Butterfly Bulletin, a Family Link-Up service and more. Brain Tumour Foundation of Canada. www.btfc.org Also available in French. Provides a national support help line, support groups across Canada, an annual series of information days for patients and the families, and the BrainWAVE activity programme for children with brain tumours. Publishes a paediatric brain tumour handbook which can also be accessed online in PDF. Funds research through support of the Brain Tumour Tissue Bank. Canadian Brain Tumour Network (CBTNet) www.cbtnet.ca Also available in French. An information exchange and research network, primarily for professionals. This site is under construction. Childhood Brain Tumor Foundation www.childhoodbraintumor.org Founded by families, friends and physicians, to raise funds for scientific research and raise public awareness and improve prognosis and quality of life for children with a BT diagnosis. Children's Brain Tumour Foundation of America. www.cbtf.org Contains a detailed overview of childhood brain tumours, and good practical advice pages on subjects such as hospital stay and school re-integration. Also maintains a comprehensive list of brain tumour support groups across the US. Gerry and Nancy Pencer Brain Trust www.uhn.ca/programs/pencer/index.html A patient support program at Canada's Princess Margaret Hospital in Toronto. Runs support groups, provides information, produces patient information binders for each patient treated at the brain tumour centre. Also runs art and relaxation therapy programmes. Give Hope - Brain Tumour Support (UK). www.givehope-btmr.org.uk Founded by the parents of a young girl who died from a brain tumour, Give Hope provides is an information resource for brain tumour patients and their carers in the UK. National Institute of Neurological Disorders and Stroke. www.ninds.nih.gov/health_and_medical/pubs/ brain_tumor_hope_through_research.htm A general, but detailed booklet on brain and spinal cord tumours. North American Brain Tumour Coalition. www.nabraintumor.org A network of brain tumour dedicated organisations which works to raise awareness of brain tumours. NABTC advocates for research funding, access to specialist care and issues affecting brain tumour patients and their families. OSCAR, Oxford - UK. www.support-oscar.org A parent support initiative for families of children receiving neuro-oncology care in Oxford, UK. Runs a support group, provides a patient's manual for families, organises social activities for families and children. The Brain Tumour Society (US) www.tbts.org Offers a network of support groups, and manages a patient/family telephone link up programme. Produces a number of books and other print resources. The National Brain Tumour Foundation (US) www.braintumor.org Offers comprehensive support for families. Includes support groups, printed/online information resources, a treatment centre database, chat room, and email newsletter. Paediatric BT Foundation of the US www.pbtfus.org Funds paediatric BT research and the US Central BT Registry, produces extensive free-of-charge resources, educational publications and newsletters, runs innovative Informed Parent Internet Conferences and awards BT survivor college scholarships. UK Brain Tumour Society. www.ukbts.org Provides information and support for patients in the UK, and their families. Runs support group leadership training days, and publishes a series of patient information booklets. Virtual Trials www.virtualtrials.com A superbly comprehensive online resource. Provides information about tumours, current treatments and active clinical trials, support and coping. Maintains the Virtual Trial, various e-groups, a video library, a directory of treatment centres and medical consultants, and hosts regular live broadcasts with experts in the field of neuro-oncology. We Can - Pediatric Brain Tumor Network www.wecan.cc A well organised support group founded by and for families in southern California. Provides regular speaker-led meetings for parents, family events, sibling workshops and "kidshops" and a Veteran Parents Program, linking newly diagnosed families with trained "experienced" volunteer parents. While You Are Waiting. www.waiting.com/brainanatomy.html http://www.waiting.com/waitingicu.html This site is geared for families of coma patients, but has some good resources about brain anatomy and injury, and an ICU guide.. |
| ORPHANS OF THE CANCER STORM |
 |