Brain and Spine Tumor Patient and Caregiver Support Resources

April 28, 2021, by Brittany Cordeiro, NCI-CONNECT Program Manager

NCI-CONNECT is honored to partner with non-profit advocacy organizations that are making an impact on our community and share our mission to improve the outcomes of adult patients with rare brain and spine tumors through awareness and education.

Our advocacy partners offer services to help patients and their families find the right clinical trial or treatment center, advocate for themselves or a loved one, and connect to others with a brain or spine tumor diagnosis. They also offer educational and support resources and host events to bring people together.

Personalized and Experienced-Based Patient Navigation

Brain Tumor Network

The Brain Tumor Network (BTN) helps patients and loved ones manage a brain tumor diagnosis and navigate the complicated healthcare system to find the best treatment.

Patients and caregivers who contact BTN are supported by a team that includes a neuro-oncology nurse navigator and an oncology social worker. The team guides individuals and families through their treatment path and survivorship at no cost.

A signature service of BTN is helping patients find the right clinical trial based on their unique diagnosis, genetic markers, and living situation. It uses a one-of-its-kind clinical trial matching system. BTN is the only organization in the United States that performs searches and has a neuro-oncology professional walk the patient through the results. Once the patient selects a clinical trial, the navigators help with enrollment. Clinical trial selection and enrollment is essential to improve patient outcomes and advance treatments for people with brain tumors. Patients and their families can contact BTN online to request a consultation or call 844-286-6110.

Oligo Nation

Oligo Nation is an organization that provides experienced-based patient navigation for oligodendroglioma. Getting optimal care for people with this tumor type is challenging, and most health care providers have limited experience treating it.

Oligo Nation understands the importance of connecting patients with leading cancer centers that have available clinical trials and neuro-oncologists with experience treating this tumor type. The organization provides information and referrals for second opinions. It also provides a breadth of resources, empathy, and understanding that only a family living with this disease can offer. Connect with Oligo Nation by emailing Brock Greene at brock@oligonation.org.

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Patient Advocacy

International Brain Tumour Alliance

In collaboration with brain tumor patient organizations from around the world, the International Brain Tumour Alliance (IBTA) launched The Brain Tumour Patients’ Charter of Rights. Its purpose is to achieve the best possible health and quality of life outcomes for adults and children living with a brain tumor. It is available in 12 languages. 

The Charter is written from the point of view of the brain tumor patient and caregiver to include the difficulties that can arise while living with a brain tumor. It addresses the rights every patient should have to diagnostic and prognostic information, health care specialists and other trained care coordinators, treatment options, and educational and support resources for the patient and caregiver.

Patients and caregivers can use the Charter to help guide them on their brain tumor journeys and advocate for their health care needs. The IBTA also hopes that the Charter can serve as a framework to improve healthcare systems and communications through discussion and debate that will reduce inequalities from country to country. Connect with the IBTA by emailing info@theibta.org. 

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Brains for the Cure

Brains for the Cure (BFTC) is an online resource to help brain tumor patients, survivors, and caregivers become an advocate for themselves. This means they can be decision makers in their own journeys, learn about treatment options and clinical trials, and connect with others through patient and survivor ambassadors, online support groups, and personal stories.

BFTC also launched online support groups for both patients and caregivers. BFTC Patient Perspectives meets the first Thursday of every month and Caregiver Conversations meets the last Thursday of every month. Both meet virtually via Zoom. Those interested can email laura@headforthecure.org for more information and to register.

BTFC also hosts the Game on Glio podcast in collaboration with caregiver, writer, and public speaker, Shannon Traphagen. The podcast is a unique, first-of-its-kind approach to supporting everyone affected by a brain tumor. The podcast will provide inspiration, hope, education, and real conversations around the difficult journey with a brain tumor. Guests include world-class neuro-oncologists, neurosurgeons, mental health professionals, brain tumor survivors, caregivers, and others in the brain tumor community. 

Educational Resources and Peer-to-Peer Support

National Brain Tumor Society

The National Brain Tumor Society (NBTS) Patient and Caregiver Toolkit is a comprehensive hub of important resources for the brain tumor community, which includes information and tools to guide patients through every step of the brain tumor experience.

The toolkit includes an easy-to-use clinical trial finder, lists of key questions patients and caregivers can ask their health care provider at each stage of diagnosis, and personalized support. The toolkit ensures that each patient has access to timely, individualized information, guidance, and connections to health care providers.

Within the toolkit, there is a library of recorded meditation classes, Brain Tumor Support Conversations, and a nationwide platform for virtual peer-to-peer support. NBTS also has an educational series called Informed in 30, which breaks down complex scientific concepts at the forefront of brain tumor research and treatment. The toolkit is instrumental to the organization’s efforts to improve the quality of life for patients and their families. Email Rachael Kittleson at rkittleson@braintumor.org for more support and resources.

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American Brain Tumor Association

The American Brain Tumor Association (ABTA) offers more than 200 webpages of information about primary and metastatic brain tumors for adult and pediatric patients, caregivers, and survivors. Information includes brain tumor types, treatment options, and emotional and social support. The website also provides comprehensive lists of brain tumor treatment centers and support groups by state.

A few of the ABTA’s educational resources include comprehensive education brochures online or in hard copy format about brain tumors, brain tumor types, and treatments. Their educational meetings and webinars are free, specifically designed for patients and caregivers, and led by nationally recognized medical professionals. The ABTA National Conference is a two-day virtual event designed to provide updates on tumor types, treatments, and research.

The ABTA Peer-to-Peer Mentor Program is a unique opportunity to sign up to connect with a trained patient or caregiver mentor to help you navigate a brain tumor diagnosis. They also host Connections Community, an online support and discussion community of more than 25,000 members. You can call 800-886-ABTA (2282) or email abtacares@abta.org to connect with their educational programs, support services, and events.

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Raising Awareness through Events and Scientific News

Collaborative Ependymoma Research Network Foundation

The Collaborative Ependymoma Research Network (CERN) Foundation, an organization dedicated to improving the care and outcomes of people with ependymoma, hosts the annual Ependymoma Awareness Day each year in May. The day shines a light on this poorly understood disease. Through awareness activities, the hope is to advocate for better diagnostic methods, new therapies, and resources to improve the quality of life for those living with ependymoma.

On Ependymoma Awareness Day, butterflies are released to honor loved ones with ependymoma, caregivers, and medical workers, and to support ependymoma research efforts. The delicate and beautiful butterfly represents the spirit of the ependymoma community and serves as a symbol of hope through change. Families from around the world raise awareness in their local communities by hosting events and sharing their stories with others.

In recent years, CERN has co-hosted Ependymoma Awareness Day with the NBTS as a part of the Head to the Hill advocacy event in Washington, D.C. The CERN Foundation is now a designated program of the NBTS, and Ependymoma Awareness Day is part of their Brain Tumor Awareness Month activities. For more information on ependymoma support resources or Ependymoma Awareness Day, email Kim Wallgren at kwallgren@cern-foundation.org.

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Gioma-Center Foundation

The Glioma-Center Foundation (GCF) is the first and only brain tumor educational and support organization in Poland. Recognizing the need to help people with brain tumors gain knowledge and understand the latest research, it started an initiative called Weekly News. GCF reviews research, scientific reports, publications, and clinical trial results related to brain tumor care and treatment. It then extracts the important information for patients and their families, translates it into Polish, and posts it to their website and social media.

GCF has published about 40 Weekly News editions. Its goal is to dive into the newest developments in the scientific world and present them in a unified and more straight-forward way for patients and their families to understand. GCF believes patients and their families should have knowledge of the latest innovative treatment and care options. Its goal to navigate patients to those options and provide hope. Connect with GCF online.

End Brain Cancer Initiative

The End Brain Cancer Initiative (EBCI) is another partner organization that provides patient support services and education while advocating for people with brain tumors and their families. Connect with EBCI by emailing wecare@endbraincancer.org.