|Whether you have been in the pediatric brain tumor world for a day, a month or years, no one can truly feel at home in a new place until good friends surround him or her. Our best friends are those we have much in common with. As we all know, children’s brain tumors are considered an “orphan” disease, so it is understandable that at times we all feel isolated, alone in our brain tumor journey.|
One of the most important functions of the A Kids’ Brain Tumor Cure Foundation is to facilitate families getting to know each other. It is important that our parent members have friends that they can talk to about the stresses of surgery, chemotherapy, complications, nutrition, education, etc. We need friends who don’t flinch when we use the words that are necessary to discuss our child’s diagnosis and medical challenges. We have discovered that raising our special children is easier when we are surrounds by friends who understand this journey. This section is intended to help patients and their families find other patients and families just like them. Thanks to the internet, this has become much easier with the proliferation of support groups, message boards and on-line list serves. While we are pleased about the growth of our own Low Grade Glioma support group (see below), we know that there are other resources out there that may be of help to families in the pediatric brain tumor community. We hope you find these groups useful and comforting as you travel your PLGA journey.
|Low Grade Glioma Kids – Yahoo Groups||This is a support group for parents of children with all forms of low grade astrocytomas – juvenile pilocytic astrocytoma (JPA), Pilomyxoid astrocytoma (PMA), pleomorphic xanthoastrocytoma (PXA), fibrillary astrocytoma, oligodendroglioma or ganglioglioma. Those with disseminated low grade gliomas are also welcome.This is a place to connect with others going through similar experiences- a chance to vent feelings about “benign” brain tumors, handling “watch and wait”, learning tricks for handling ‘after’ chemo side effects, and discussing other forward thinking ideas about PLGA advocacy/research/fundraising, etc. List Owner, Dr. Loice Swisher, created the LGG support group in 2005 in conjunction with the former www.fightjpa.org website (the precursor for www.fightplga.org specifically) exclusively for PLGA families.|
|Low Grade Glioma Week at Camp Sunshine||For the past 4 summers, A Kids’ Brain Tumor Foundation has sponsored a Low Grade Glioma week at Camp Sunshine in Casco, Maine. The week at camp is FREE for the entire family and it is a fantastic place to meet other families who are on a similar journey. Typically there are presentations from leading medical/scientific experts in the field, as well as different parent support sessions.|
|Low Grade Glioma Facebook Group||Join this parent support group comprised of families with children battling the most common forms of brain tumors. Ask questions and get answers and support from parents who understand this journey.|
|Optic Glioma Kids – Yahoo Groups||This list serve is designed specifically for families with children who suffer from any form of optic glioma brain tumor. Share your experiences, ideas and more with families who understand the specific challenges that these type of children encounter. Moderated by Dr. Loice Swisher.|
|Pilomyxoid Astrocytoma (PMA) Kids – Yahoo Groups||Support and information for parents of children (pediatrics) affected by a Pilomyxoid Astrocytoma brain or spinal tumor (PMA).|
|Pediatric Brain Tumors – Yahoo Groups||This list is for the discussion of all Pediatric Brain Tumors, primarily by parents and immediate family. Medical professionals are also allowed to take part in the discussions|
|Pediatric Brain Tumor Facial Paralysis – Yahoo Groups||
This group is for parents and caretakers to gain information and support regarding facial nerve paralysis after surgery for pediatric brain tumor removal.
|Cerebellar Mutism – Yahoo Groups||This site is primarily a support group of parents and friends of children with brain tumors (medulloblastoma, astrocytoma, ependymoma, rhabdoid, choroid papilloma as well as others) who suffered from cerebellar mutism and posterior fossa syndrome after brain tumor removal. Approved members can access a 52 web based resource guide for children with brain tumors from the main page. Hope and strength can come from finding that this road has been traveled before.|
|Parent 2 Parent Network||The Children’s Brain Tumor Foundation’s oldest program, Parent-to-Parent Network, connects parent volunteers with parents looking for the support only another parent who has been there can offer.|
|Oz Brain Tumor||The purpose of this site is to provide a community of support for Australians dealing with brain tumors. This group was established in 2000 and now is one of FOUR discussion groups, each with a different focus. You may join any or all of these.|
|The Healing Exchange Brain Trust||This email support groups allow individuals to access a global network of patient support systems. These online support groups of T.H.E. BRAIN TRUST are peer-lead.Theprimary services are delivered to over 2200 subscribers who participate in more than a dozen online support groups. Membership in these groups includes patients, survivors, caregivers, family members, friends and individuals who in some cases represent extended families, entire support groups, and/or groups of health care providers and renowned clinics / research centers from across the world that have access to email. Services are available 24 hours a day and are not restricted by geographic, economic or similar boundaries.|
|EducatingBTKids||The purpose of this site is to create a unique education resource center for teachers, schools, parents, and social workers on the subject of educating children with brain tumors (medulloblastoma, astrocytoma, ependymoma, brain stem glioma, etc.).|
|Compassionate Friends||A support group for parents and families when a child dies, including local groups, brochures, information, and resources.|
CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.
|Cancer Society Support Groups||CancerSociety.com is an effective tool for patients, families, physicians, healthcare professionals, and educators to gather information, discuss topics of interest with one another and find necessary resources in a fast, effective and accurate manner. The message boards provide a wide range of topics to post and discuss.|
|National Brain Tumor’s News and Blog||NBTF’s News and Blog contains recent news from across the brain tumor research field. Keep up to date with what is going on and post your comments to share your thoughts with others.|
|Children’s Tumor Foundation Message Boards||The Children’s Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well-being of individuals and families affected by the neurofibromatoses (NF). The site has messageboards that cover a variety of topics and areas of interest.|
|Squirrel Tales||An uplifting and practical website to encourage and empower parents of kids with cancer when they feel discouraged and hopeless.|
|Rare Cancer Alliance||The Rare Cancer Alliance forums were created to give newly diagnosed rare and pediatric cancer patients and their caregivers quick access to peer support and treatment information. You can find others with your pediatric or rare cancer, doctors and facilities that have treated your cancer, and websites that are specifically about your cancer.|
Editor’s note: A Kids’ Brain Tumor Cure Foundation has provided these connections as a service to our readership. We are entirely a third party to these entities and therefore do not endorse any one site. Please contact us at firstname.lastname@example.org if you would like to recommend any other family and parent support websites for us to list.