24 HOUR ONLINE PEER TO PEER SUPPORT THROUGH THE INSPIRE COMMUNITY
American Childhood Cancer Organization introduced an online community to our members and friends in 2008. In partnership with Inspire, a company that builds and manages online healthcare communities, we’ve created a place where you can connect with others who know what you are going through. Among the many exciting features our new community offers, you can:
- Participate in discussion groups – or even just read what others have to say
- Post personal profiles – share as much or as little as you’d like about yourself
- Post personal photos or videos
- Invite other members to be friends
- Create a personal journal (or “blog”) where you can express your feelings and allow others to comment
- Read others’ journals to learn about their experiences
EMAIL SUPPORT GROUPS
Parents of children with cancer can also find information and emotional support by participating in an online listserve. A listserve is simply a group of people who communicate by e-mail. For instance, a member of the listserve (or “list” for short) posts an e-mail to the list address, and then all the members of the list receive that e-mail. Most listserves can also be read and responded to via a web browser interface. Listserves work especially well as means of communication for house- or hospital-bound parents of kids with cancer. Some great friendships have been born on pediatric cancer lists because of the nature of the intense interaction and discussion.
Online support resources other than listserves include message boards and chat rooms. ACCO (Then Candlelighters) had a message board until March 2006; it was taken down because it was deluged with spam messages. Chat rooms and message boards are usually unsupervised and are not as private as listserves.
Most of the lists below are sponsored by ACOR (Association of Cancer Online Resources). These lists are highly recommended. ACOR is a non-profit organization that exists to provide information and support to cancer patients and those who care for them. Each ACOR list has a small group of administrators who oversee the activity on the list. These administrators are volunteers with knowledge in childhood cancer, usually because their own child has or had cancer. They work to protect the list from unsolicited advertisements, and they gently correct both inaccurate information and improper behavior (ACOR list rules and guidelines). Archives of posts in ACOR lists can only be read by members of the list: they are not open to the public. Lists sponsored by Yahoo or other organizations might or might not be able to assure that your personal information will never be collected or sold and that the list archives can only be viewed by listmembers.
ACCO may provide links on the Website to other websites which are not under the control of ACCO. In general, this is any website which has an address (or URL) which does not contain “acco.org” or “americanchildhoodcancer.org”. These links are provided for convenience of reference only and are not intended as an endorsement by ACCO of the organization or individual operating the website or a warranty of any type regarding the website or the information on the website.
The ped-onc group was founded in 1997 and was the first ACOR list created for parents of children with cancer. Listmembers have children currently in treatment, in long term remission and unfortunately, some have lost their children to the cancer. Most important, it is a place where parents can openly and freely discuss the health and social problems related to treatment. The psychological and emotional impact of being “Cancer Parent” are integral themes for discussion in ped-onc and in all of the ACOR childhood cancer listserves.
This group is for parents, adult friends, and adult caregivers to children with acute lymphocytic leukemia. This includes parents’ experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices.
The rhabdo-kids group was founded by parents of children with rhabdomyosarcoma. Listmembers include families of children (and some adults) currently in treatment, recently off treatment, in long term remission and unfortunately, some who have lost their children to this disease. The list is open to parents, grandparents, close friends and health professionals of children with Rhabdomyosarcoma who need or can provide information or support regarding treatment of this disease.
Wilms-kids is an e-mail support list for parents and caregivers of children who have had a diagnosis of Wilms tumor (kidney cancer). All aspects of treatment and emotional support issues are discussed.
The AML list is for patients, loved ones and others who have an interest in Acute Myeloid (or Myelogenous) Leukemia. Survivors include AML patients, spouses or other caregivers for AML patients and parents of AML patients (both adults and children). The health and social problems related to treatment as well as the psychological and emotional impact of the disease and its treatment are freely discussed.
The BMT-Talk list was founded in 1993 by Laurel Simmons, a BMT survivor. BMT-Talk subscribers include bone marrow transplant and peripherial blood stem cell transplant survivors, spouses or other caregivers of BMT patients or patients facing a BMT and parents of children who have had or while have a BMT. Donor issues are discussion on occassion as well. The psychological, emotional and logistical issues of bone marrow transplants are freely discussed on BMT-Talk.
N-blastoma is an e-mail support list for parents and caregivers of children who have had a diagnosis of neuroblastoma. All aspects of treatment and emotional support issues are discussed.
R-blastoma is an e-mail support list for patients, and parents and caregivers of patients who have had a diagnosis of retinoblastoma. The main focus of the r-blastoma mailing list is intended to be a forum for r-blastoma patients and their loved ones to exchange experiences on coping with the disease and to gain information that is often hard to find. The content of r-blastoma can vary widely from day to day. On any given day you may see questions about a specific disease or treatment protocol, a progress report, poetry, humor, or almost anything else. Anything that helps one deal with and beat cancer is fair game. We hope you will come to regard us as a “virtual family” with whom you can share your joys, your hopes, and your fears.
This list is for parents and caregivers of children who relapse from ALL. The relapse treatment protocols are more aggressive than the treatments for ALL in first remission, and often include bone marrow transplants. As in other pediatric cancer lists, all aspects of having a child with cancer are discussed.
4YOUth is a list for young people who have or had cancer. Parents of children with cancer are not allowed in this group. The list is overseen by an adult survivor of cancer who has years of experience working with young survivors of cancer.
Ped-onc-survivors was founded in September of 2000 by a parent of a survivor of an adolescent cancer and a long term survivor of an adolescent cancer. POS is intended for parents/family members of survivors who are off treatment for any type of childhood cancer. In POS, we discuss all aspects of survivorship, and share ideas, information, and support.
The LT-survivors listserve discusses finding and establishing good follow-up care. It addresses the social issues that are of concern to survivors (insurance, disability benefits, employment and education discrimination). But perhaps most importantly, it is a place where survivors can openly and freely discuss the health problems related to treatment. Additionally, the psychological and emotional impact of being a “long-term survivor” (versus a “cancer patient”) are also integral themes for discussion on the LT-survivors listserv.
A Yahoo list of over 70 primarily caretakers of children with pediatric brain tumors of all varieties.
An e-mail support group for parents who have lost a child to cancer, or whose child is in hospice care for cancer.
A Yahoo list for Jewish parents who have lost a child.
Apraxia-Kids mailing list
This website and mailing list covers oral motor apraxia and related disabilities. To subscribe, send an email with the message “subscribe apraxia-kids FirstName LastName.”
Cerebellar Mutism Brain Tumor Listserv Yahoogroup
Listserv providing information and online support for parents and caregivers of children who suffered from cerebellar mutism and posterior fossa syndrome after brain tumor surgery/resection. Included is a 52 page web-based resource guide.
DIPG Listserv Yahoogroup
This group is primarily for parents of children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). The membership includes parents who are in all stages of the DIPG journey.
Educating Brain Tumor Kids
A group with links and files dealing with neuropsychological testing, school re-entry, school options, late effects, etc. There is an associated listserv with archives.
Home Schooling Special Needs Children
This group is interested in supporting parents who chose to home school their children with special needs. Most members have medically fragile children dealing challenges in speech, motor development and learning disabilities and home school full time or part of the time. Topics include: curricula, speech, feeding issues, OT, PT, siblings, and a host of other issues.
This list is open to all people interested in hydrocephalus.
IEP Guide and Listserv Yahoogroup
This is a very large listserv of more than 1600 people that offers special education support and has a free IEP guidebook.
Low Grade Glioma Kids Listserv Yahoogroup
Online support group for parents of children with low grade gliomas of any type including juvenile pilocytic astrocytoma (JPA), pilomxyoic astrocytoma (PMA), pleomorphic xanthoastrocytoma (PXA), fibrillary astrocytoma, oligodendroglioma or ganglioglioma.
Medulloblastoma Brain Tumor Listserv Yahoogroup
Listserv providing information and online support for parents and caregivers of children diagnosed with a medulloblastoma brain tumor.
Pediatric Brain Tumor Angels Listserv Yahoogroup
Listserv providing online support for parents and caregivers who are facing end of life issues with a child who has a brain tumor and to provide extended support for parents of children who have died after battling a brain tumor.
Pediatric Brain Tumor Facial Paralysis Listserv Yahoogroup
Listserv providing online support for parents and caregivers to gain information and support regarding facial nerve paralysis after surgery for pediatric brain tumor surgery/resection.
Pediatric Brain Tumor Listserv Yahoogroup
Listserv providing information and online support for parents and caregivers of children diagnosed with all types of pediatric brain tumors including: Astrocytoma, Atypical Teratoid/Rhabdoid, Glioblastoma Multiforme, pleomorphic xanthoastrocytoma, Craniopharyngioma, DIPG, Gangliocytoma, Ganglioglioma, Germinoma, Glioma, Medulloblastoma, Metastatic Brain Tumor, Neurocytoma, Oligodendroglioma, Juvenile Pilocytic Astrocytoma, JPA, Pineocytoma, Pineoblastoma, PNET, Diffuse Intrinsic Pontine Glioma, Primitive Neuroectodermal Tumor, Teratoma, and ependymoma.
The main focus of the RB-Survivors mailing list is intended to be a forum for r-blastoma survivors to exchange experiences on coping with the disease and to gain vital information that is often hard to find.
For parents/caregivers/doctors discuss the brain cancers, medulloblastoma and PNET. Communicate with parents, patients, relatives and doctors through e-mail on the subject of Medulloblastoma and PNET brain cancers. Although the list is primarily a medulloblastoma list, any primary brain tumour will not be turned away. Some other representative cancers include: ependymoblastoma, pineoblastoma, spongioblastoma, and other types of childhood primary brain and spinal tumours.
Brain Trust list: Brain tumors (not pediatric specific). Braintmr is a listserve for brain tumor patients and caregivers.
This Yahoo list is a list of approximately 65 people who share a common interest in these complications from posterior fossa surgery. The files and book marks are one of the best aspects of this site. There is an annotated bibliography from a medline search on cerebellar mutism, a bibliography on radiation and cognitive effects, and several articles from a speech pathologist. Several parents as well as medical professionals are on this list.