As my network in the brain cancer community has grown over the past few years, I have had conversations and made observations that shape this post -
People often want to get more involved in efforts to find better treatments and a cure, but may not know where to start.
Individuals affected by brain tumors and brain cancer are looking for ways to connect and build community. What support and resources are out there?
It is important to remember self care when dealing with brain cancer. Cancer of any kind affects both the individual facing it as well as their family and friends.
If new to brain cancer (or a brain tumor), it is hard to know where to start, particularly when dealing with the shock of a diagnosis. I hope that this post provides a few ideas that may be helpful whether you are a patient, survivor, family member or friend.
Community Events - Walk or Run for a Cure
Most of the national brain tumor organizations in the United States host community events such as 5K walks and runs throughout the year. These are often planned well in advance. The proceeds from these events help fund research, education and community support initiatives. A few places to start can include American Brain Tumor Association’s Breakthrough for Brain Tumors 5k (BT5k) Run & Walk, National Brain Tumor Society’s Walks, Races & Activities, and Head for the Cure Foundation’s 5K Runs/Walks and Community Events. There may also be smaller organizations specific to your brain tumor type that organize events. In my case, Oligo Nation events raise funds specific to oligodendroglioma, my type of brain cancer.
What I really appreciate about these types of events is that you can get as involved as you would like. You can start by walking or running. Take a friend or family member with you! These gatherings can be a lot of fun. There is so much hope and community building involved. It can also get emotional. People - whole teams - may walk or run in honor of a deceased loved one. You may see this and tear up. At the same time, you see how much love and hope there is our community when we come together in person and lift one another up.
Other ways to get involved in the walks or runs including volunteering at the events! From helping with set up or clean up, to registering participants, to passing out water on the route, to cheering participants on, to being a volunteer photographer, there are all kinds of ways to support 5K events that are incredibly appreciated by event organizers and participants. If you really enjoy an event and want to do more, see if you can serve on an organizing committee. If you’ve started as a single participant this year, start your own team the next year. And if there isn’t such an activity in your town, plan one! It can start small and grow. Feel free to reach out and I will be happy to share more about my own experiences about all of the above. I can connect you to my sister Detta, who has done an amazing job fundraising and organizing with Oligo Nation for four years running.
Join a Peer Support Group
Whether through an organization (local, regional or national), or through your own hospital, consider joining a peer support group. These groups are available both for cancer patients and caretakers. In my own experience, different types of sessions and programming are involved in such groups. Often, they involve an educational presentation by a neuro-oncologist, neuropsychologist, an oncology dietitian, or other healthcare professional. Sometimes, they are an opportunity to share and get to know others in the session. You can always try such a group and if you find it helpful, continue. And if it is not the right time or fit, you can always come back at another time or try a different group. Always give yourself the permission to do what feels right for you.
Advocate and Raise Awareness
The National Brain Tumor Society has a comprehensive program for brain tumor advocacy. My mom and sister have participated in their annual Head to the Hill event in Washington, D.C., and I have participated in their virtual event to meet with my local representatives. This is a great way to get the attention of members of Congress or their staff to share personal stories and advocate for our needs. NBTS also provides templates to write letters to members of Congress around important legislation.
If and when it feels appropriate, you can also make a difference by sharing facts and your personal story about brain cancer on social media. So many people around the world are affected by cancer. The more we share, the more we destigmatize it, support one another, and make grassroots efforts for faster and impactful change.
Take Care of Yourself
Remember to take care of your own health throughout this whole process! I have benefited tremendously from many different resources around brain cancer. And I have met wonderful people in the process! Hospitals and community organizations offer both in-person and online programs to support cancer patients and survivors, including some specific to brain cancer. These may include yoga, tai chi, meditation, cooking, art, and other activities. Check out resources offered by your hospital and local organizations. You can see several yoga and meditation resources on my blog here.
The above are just a few ideas for how to get involved in brain cancer support. There are many more. I welcome your comments and suggestions - let's keep the dialogue running!
Photo: 2024 Fast Track to a Cure 5K Bay Area for Oligo Nation, Marina Bay, CA
(photo credit: Elizabeth Geshel)
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