Resources
Connect to Support Groups
| Whether you have been in the PLGA 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, PLGA is considered an "orphan" disease, so it is understandable that at times we all feel isolated, alone in our PLGA journey. |  |
One of the most important functions of the PLGA 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 our PLGA friends.
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 PLGA community. We hope you find these groups useful and comforting as you travel your PLGA journey.
| Organization | Description |
|---|---|
| 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), pilomxyoic 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 http://www.fightplga.org)%20specifically/) 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).
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| 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.
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| 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. |
| 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 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. The 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 when a child dies, including local groups, brochures, information, and resources. |
| CancerCare |
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 a wide range of topics to post and discuss. |
| National Brain Tumor Foundation Message Boards |
NBTF Message Boards are for brain tumor patients, survivors, family members, caregivers or health professionals dealing with the same tumor types to "meet" and exchange ideas through the internet on the latest treatments and research, as well as to share the physical and emotional challenges of living with a brain tumor. |
| 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 Support Forum |
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. |
Editors note: The PLGA 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 contact@fightplga.org if you would like to recommend any other family and parent support websites for us to list.