The PLGA Foundation’s mission of uniting the PLGA community through shared experiences, information, ideas and resources could not be possible without the support of people and families like yours. We are so grateful for your participation in our community.
The PLGA Foundation welcomes support network resources of all forms – List Serves, forums, bulletin boards,and more – that enable our PLGA parents to ask questions and find answers. The following List Serves may be of particular interest to the PLGA community as they have been developed specifically for families in the PLGA world. They include:
|Low Grade Glioma Week at Camp Sunshine||For the past 2 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 Kids – Yahoo Group||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 a forum for 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 fightjpa.org website (the precursor for fightplga.org) 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 group allows parents and family members of patients to meet and take part in discussions. Medical professionals are also allowed to take part in the discussions.|
|Cerebellar Mutism – Yahoo Groups||This site is primarily for 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.|
|Lighthouse SOS||Lighthouse SOS is a unique system of support for families affected by pediatric brain and spinal cord tumors. The site provides one-on-one peer support from other parents, chances for patients to meet and talk, and nationwide discussion groups.|
|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 offour discussion groups with different focus. You may join any or all of these.|
|The Healing Exchange Brain Trust||Our email support groups allow individuals to access a global network of patient support systems. The online support groups of T.H.E. BRAIN TRUST are peer-lead.
Our primary 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 dealing with the death of a child; includes 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 Forum||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 many areas to post and discuss depending on the topic.|
|Children’s Brain Tumor Foundation Support Networks||Children’s Brain Tumor Foundation offers supportin two different ways. The Family-to-Family Network provides information and support to parents with a child who has had a brain or spinal cord tumor by creating a linkage to another parent who has had similar experiences; Telephone Support Groups meet once a week for six weeks and give participants a safe and supportive environment for discussing difficult issues relating to their situation.|
|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 message boards that cover a variety of topics and areas of interest.|
|Squirrel Tales||An uplifting and practical website that encourages and empowers parents of kids with cancer when they feel discouraged and hopeless.|
|Rare Cancer Alliance Support Forum||The Rare Cancer Alliance forums were created to give newly diagnosed rare and pediatric cancer patients and their care givers 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.|
Collaboration between the PLGA Foundation and families associated with these List Serves will help ensure that families have the information, choices, opportunities and support they need. When we unite in the fight against PLGA, families, clinicians and the Foundation can make a real DIFFERENCE.