Support for all
Online support groups
Astro Fund runs an online support group, ‘Low-Grade Glioma Support’. This is a secure internet chat group for patients and carers from around the world, living with both paediatric and adult low-grade gliomas. This supportive and informative environment is moderated jointly by patients, carers and the Astro Fund team.
To join our Low-Grade Glioma internet chat group, see http://health.groups.yahoo.com/group/gliomasupport/ or email glioma@hotmail.co.uk
The online groups listed below are NOT run or endorsed by us, but are listed here for your convenience. Often these communities provide an invaluable source of support and information. Many people are members of more than one group, none require exclusive membership, and all are free to join. If you know of more which should be added, please let us know.
General Online Groups:
- Macmillan Cancer Relief ‘We Talk Brain Tumours’ is a forum used mainly by people based in the UK, and is open to all tumour types
- BTUK is a UK based self-help news and discussion group for patients, carers and others affected by brain tumours of all grades. It is operated solely by Brain Tumour Action, (Scottish Charity No SC 021490) and has been running since April 2002.
- Low Grade Glioma Kids site This is a support group for parents of children with low grade gliomas of any type and location. This is a place to connect with others going through similar experiences- a chance to talk about people who don't understand "benign" brain tumors, handling "watch and wait", and to discuss advocacy/research. The group is the listserve of choice for the US based charity FightPLGA (and its older sister Fight JPA).
- Pediatric Brain Tumors- This list is for the discussion of all paediatric brain tumours, primarily by parents and immediate family. However, all medical professionals both involved in the diagnosis and treatment are welcome. We deal with the tough stuff head on. We laugh, we cry, we argue and vent together as we search for answers.
- Educating Brain Tumor Kids The purpose of this site is to create a unique education resource centre for teachers, schools, parents, and social workers on the subject of educating children with Brain Tumours (medulloblastoma, astrocytoma, ependymoma, brain stem glioma, etc.).
- bthealthykids This is a list created by brain tumor patients and caregivers of brain tumor patients who, in addition to the many demands that come from dealing with a brain tumor in the family, are also contending with the day-to-day joys and sorrows of raising children. There are many extra concerns and stresses with respect to parenting issues, whether they have to do with the children's questions about the brain tumor or a simple bee sting.
- btcaregivers This is the only forum where brain tumor caregivers can praise and rail, laugh and fume, feel their whole fear and release their stress without the worry of hurting the loved one for whom they offer care. Just as there are things that patients can only discuss with each other, there are things that caregivers can only truly express to other caregivers
- Bt-finance Group: For discussions involving financial matters among people interested in brain tumours, including insurance issues, disability issues, prescription assistance plans (mainly US based issues)
- Brain - Activist Group: An e-mail discussion of legal, regulatory and public policy issues impacting cancer patient rights and benefits in clinical trials, especially brain cancer patients. Purpose of educating and empowering the patient community and especially the brain cancer patient community.
- Braintumour Community Group: For NON Medical discussion - for patients / caregivers / doctors interested in brain tumours. This is an adults only group, some humour and discussions will be offensive, political discussions are welcome! Use this group for the types of messages that are off-topic on the other groups! Run by the Musella Foundation.
- Bt-Faith Group: For discussions involving faith / religion / God among people interested in brain tumours.
- Teens of Parent Survivors is a support group started to allow teenagers who have parents with a brain tumor to discuss issues, concerns, and just talk about everyday life while having a parent who is ill. Please email me at OoLewieoO@aol.com if you would like to join. ~ Rita Lewis
- Brain Tumor News Group: A 'read-only' list which disseminates articles on Brain Tumours to Brain Tumour patients, caregivers and health professionals
Groups focussed on a LGG Tumour Type:
- Brainstem Glioma Group: The Brainstem mailing list is a group of brainstem glioma patients, parents, caregivers and medical professionals
- Cerebellar mutism and posterior fossa syndrome This site is primarily for support of parents/friends of children with brain tumours who suffer from cerebellar mutism and posterior fossa syndrome after brain tumour removal. Approved members can access a 52 web based resource guide for children with brain tumours from the main page. Hope and strength can come from finding that this road has been travelled before. We encourage all medical professionals to join. Medical professionals may remain anonymous on the list after introducing themselves to the moderators upon subscription.
- Adult ependymoma mailing list - an on-line support group for adult ependymoma patients, caregivers and relatives
- Hypothalamic Obesity , an unexplained weight gain complication of neurosurgery near the hypothalamus.
- Oligodendroglioma Online Support Group is a private support and information network consisting of over 200 survivors and caregivers. The group is hosted by T.H.E. Brain Trust -The Healing Exchange.
- Optic Glioma Group The Optic Glioma mailing list is a group of optic glioma patients, parents, caregivers and medical professionals
- Pituitary Tumor List The Pituitary List Serve is designed for patients and care givers who have, or have had Pituitary Tumours and Disorders.
- Tectal Gliomas This is a support group exclusively for those living with, or have a loved one with, a tectal glioma. Medical professionals are also welcome. As this type of tumour is a fairly rare and distinct subgroup of brainstem tumours, this group will benefit from the support of those who are facing similar challenges.
Groups focussed on a Treatment:
- BrainSurgery Group a support website/mailing lists for brain tumour patients, has been in operation since February 2000. Their purpose is to educate patients, families and medical professionals and to improve the quality of medical care/follow-up and increase knowledge and awareness.
- Fenretinide. This list is a discussion group for anyone taking or has an interest in Fenretinide and other retinoids (accutante, retinoic acid) for the treatment of cancer.
- Ruta 6 - An alternative treatment for brain tumours. The Musella Foundation are doing a study to track the outcomes of this experimental treatment. To participate, join the brain tumor virtual trial.
- Temodar (Brain - Temozolomide) Group: Originally was for patients / caregivers / doctors interested in the drug Temozolomide (Temodar) for brain tumors. Now they have expanded it to include all medical treatments for all types of brain tumors: malignant, benign, primary and metastatic. No talk of politics, jokes, religion allowed. This one is run by the Musella Foundation
Groups focussed on a Geographical Area:
- Australian Brain Tumour Discussion Group
- Pacific NorthWest Braintumor List: For brain tumor patients / caregivers in the United States Pacific Northwest
- Brain Tumor Canada Group: supports the treatment of brain tumours in Canada.
Groups focussed on End of Life and Bereavement:
- BEREAVEMENT - The Bereavement Support Group is an online community whose purpose is to provide support to family members and friends who have lost a loved one due to a brain tumour.
- SupremeCrossings Mailing List is open to any individual needing support or wishing to provide support in the areas of Brain Tumour end of life, before, during and after as well as sharing and providing home health care support issues