At A Kids’ Brain Tumor Cure we know that parents in the pediatric brain tumor world need friends that they can talk to about the stresses of surgery, chemotherapy, complications, nutrition, education and more. We need friends who don’t flinch when we use the words that are necessary to discuss our child’s diagnosis and the medical challenges we face on a daily basis of having a young child with an “orphan” disease. We have discovered that raising our special children is easier when we are surrounded by friends who truly understand the isolation and uncertainty of having a child with brain cancer. This section is intended to help patients and their families find other patients and families just like them and to empower them to become part of a community waging the same war against pediatric brain cancer. We are pleased with the growth of our own Low Grade Glioma support groups and recognize that there are other resources that may be of help to families in the pediatric brain tumor community. We hope you find these groups useful and a comfort as you travel this pediatric brain cancer 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.|
|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.|
|EducatingBTKids – Yahoo Groups||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.).|
|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. For more information, please visit www.campsunshine.org.|
|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.|
|Family-to-Family Network||The Family-to-Family Network (F2F) is CBTF’s oldest program. The F2F Network connects parent and survivor mentors to families who are seeking peer support.|
|Oz Brain Tumour||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.|
|Mikey’s Way Foundation||The mission of Mikey’s Way is to way help connect and enrich the lives of children suffering with cancer and other life-threatening illnesses. It is the goal of the foundation to be able to connect every child with their friends, family and school, enabling them to cope with the long hours, days and weeks of separation that they must endure.|
|Social Security Disability Help||With the number of applications for Social Security Disability on the rise, it is becoming increasingly difficult for people with disabilities to receive a favorable decision from the SSA regarding their disability claim. With denial rates for the initial application stage climbing to well over 60% in recent years, many applicants find themselves unsure of their options and unprepared to further pursue a claim for the benefits that they rightfully deserve. This organization, not in any way affiliated with or endorsed by the Social Security Administration, will provide a free, no obligation consultation about your claim. If caring for your child is causing you to struggle financially, you may be eligible to receive Supplemental Security Income (SSI) benefits. SSI is a federal program that assists families of children and adolescents with special needs or disabilities. To learn about the disability benefits that may be available to brain tumor patients, please click here.|
|Helping Students with Visual Impairments||Accredited Schools Online has compiled a comprehensive list of resources to assist students with all levels of visual impairment and to help improve the overall accessibility of resources to ensure academic success. The list includes information about assistive technologies, how schools can accommodate students with visual impairments, scholarship opportunities for the visually impaired and other useful resources.|
|College Resources for Students with Disabilities||Affordable Colleges Online has prepared a comprehensive list of support, advocacy and assistive technologies to help prospective college students with disabilities make the transition to postsecondary education less stressful. Specific information and resources are available for a variety of different disabilities including learning, speech and visual.|
|The 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.
|National Brain Tumor Society||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.|
|We Can||We Can Pediatric Brain Tumor Network, located in Los Angeles and serving all of California, brings together families of children diagnosed with brain tumors in order to share information and personal stories, allowing young patients, their siblings and parents to nurture and empower one another to face treatment, recovery, long-term survival, end-of-life issues or bereavement.|
|Tom Coughlin Jay Fund||Our mission is to help families tackle childhood cancer by providing comprehensive financial, emotional and practical support. From diagnosis to recovery and beyond, we are part of the team, allowing parents to solely focus on their child’s well being. Our goal is to BE THERE for parents facing the unthinkable so they can be there for their families.|
|Sophie’s Giving Tree||A non profit raising money for CNY families in a medical crisis and children’s brain tumor research and awareness. In memory of Sophie J.|
|Chris Elliott Fund||Chris Elliott Fund’s Patient Support Services Program provides brain tumor patients, whether newly diagnosed or battling a brain tumor recurrence, with detailed information, resources and support via phone or email.|
|The Musella Foundation||The Musella Foundation For Brain Tumor Research & Information, Inc is a 501(C)3 nonprofit public charity dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research.|
|The Lily Fund||The Lily Fund helps improve the quality of life for children with brain tumors and their families by providing services which meet their vital needs and increasing awareness of available support.|
|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.|
|American Childhood Cancer Organization||The American Childhood Cancer Organization is the largest national, grassroots organization standing at the forefront of the battle against childhood cancer. Among other services, ACCO provides 24 hour online peer-to-peer support to connect with other caregivers, participate in online discussion groups and create a personal profile.|
|Coalition Against Childhood Cancer||The founders of CAC2 first met together in 2011 to explore ways the community could work together to raise awareness and collaborate, without duplicating the efforts of existing organizations. This grassroots movement brought together representatives of small, medium- sized, and large organizations and committed individuals who fight childhood cancer and provide support to the children and families affected by the disease. Among other services, CAC2 provides family-to-family programs that pair families together who have faced similar challenges to lean on and support each other.|
|Imerman Angels||Through their unique matching process, Imerman Angels partners anyone seeking cancer support with someone just like you – a “Mentor Angel”. A Mentor Angel is a cancer survivor or caregiver who is the same age, same gender, and most importantly who has faced the same type of 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 [email protected] if you would like to recommend any other family and parent support websites for us to list.