Connecting with brain tumor support groups can help you deal with the day to day issues and learn about your treatment options. You may be able to find compassionate peers and professionals who can provide a shoulder for you to lean on, and you can do the same for others—if and when you feel ready to offer support.
Advocacy, awareness, social activities, and fundraising for brain tumor research are among the benefits you can take advantage of by being part of a brain tumor support group.
But not every support group has the same exact features. You might decide to participate in more than one support group to meet your needs, as you learn how to cope after being diagnosed with a brain tumor. We’ve chosen a few brain tumor support groups to help you throughout your treatment and beyond.
These services are designed to guide people upon the diagnosis of a brain tumor, or at any time throughout the process of living with it. The ABTA Social and Emotional Support services offer a broad range of support resources, including the opportunity to share stories, volunteer, learn about brain cancer, and find mentors.
ABTA Social and Emotional Support services offer a mentor-matching service that pairs members with people who have had similar experiences. People can connect with a mentor to receive guidance and answers to their questions from someone who has experience with their diagnosis.
One of the key features of this community is building a social connection while maintaining member privacy.
Education includes online information about brain tumors, as well as webinars that provide updates on research and treatment. In-person gatherings include activities such as local golf, running, and walking events.
Children and families may need lasting support and direction when learning how to manage these complex issues. Families can be part of the community by participating and volunteering in local walk/run events or galas that raise funds for childhood brain tumor research.
The website provides a place for children and their parents to read the experiences of others who survived a childhood brain tumor. They can get updated information about treatment and research on the website, and you can sign up to receive newsletters.
One of the main objectives of the group is building a sense of community through in-person and digital meetups to reduce the sense of isolation that adolescents and young adults who have brain cancer can experience.
Stupid Cancer also has a blog that showcases personal stories from the community, and its website also features webinars on topics that are of specific interest to young adults, such as dating and fertility.
In addition to the staff, the support group also relies on volunteer meetup leaders who organize and host local, in-person events, or digital meetups. The community welcomes member suggestions for venues and activities.
Brain Tumor Network’s core service relies on a volunteer advisory network of neurosurgeons, neuro-oncologists, and other healthcare providers around the country. Members will be assigned a personal navigator to help with the process of gathering records and sending them to the Brain Tumor Network.
A network of professionals will review the records and treatments, including imaging studies and biopsy specimens, to provide individualized treatment options, which can include clinical trials.
Navigators can also help connect members with a local community group of brain tumor patients and survivors for an in-person community of support. As part of its multidisciplinary team, the Brain Tumor Network also has an oncology social worker on staff who is available to offer members and their families guidance and support.
Meningioma Mommas connects patients who are newly diagnosed with a meningioma and meningioma survivors through an online Facebook support group. Members can interact with other patients and survivors through the group, sharing their personal tips and helping each other cope, as they learn what to expect.
And, many support group members also choose to take the community support further by meeting in-person through local “meet and greets” and small social gatherings. Meningioma Mommas also works to raise awareness about meningiomas and the importance of meningioma research.
The community also works hard on fundraising initiatives for meningioma-specific research. Funds are raised through contributions as well as events, such as runs. Meningioma Mommas have granted proceeds to promising research projects at a number of prominent universities throughout the U.S. like Stanford University, Harvard University, University of Utah, and more.
The Pituitary Network Association addresses these needs with self-help groups, support groups, and Facebook groups. They are all focused on providing a community and can be held in a social environment or a community location.
Support groups are held in a medical environment and are focused on learning new coping strategies and problem-solving skills. They are guided and run by mental health professionals. For all self-help groups, a mental health professional is present to help participants process the emotionally-laden issues that come up within the community experience. While they are not directive in any way, they have an educational component.
In addition to in-person groups, the Pituitary Network Association Support Group runs two online communities on Facebook, where patients and their families can interact with each other. The option is available to participate in any or all of the formats for support.
The group offers a publicly accessible question and answer component on the website, which is divided into sections such as “NF 1 and children” or “NF 1 and pregnancy.” These discussions are rated based on their level of usefulness. There’s also a private group for closed discussions with members.
The Neurofibromatosis Network also includes local branches and Facebook groups. The community offers events for patients of all ages, including concerts and opportunities to join advocacy groups or awareness campaigns.
Resources for children’s activities, such as camps for kids who have NF, are also available.
