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Join our Private Facebook Community to Share and Connect

, by NCI-CONNECT Staff

If you are living with a rare brain or spine tumor, you are not alone. Our private Facebook group, NCI-CONNECT Community, wants to connect you with others with your diagnosis.

If you have been diagnosed with a rare brain or spine tumor, we understand you face unique challenges. You may struggle to connect with people with your diagnosis or find educational resources to help you understand your disease. Our private Facebook group called NCI-CONNECT Community is here to help.

We encourage you to join our group to connect, share, and learn. It is intended for people with rare brain and spine tumors and their loved ones. Each week, we share educational information and ask for your feedback.

We’ll provide positive coping strategies and ask for you to tell the group what works best for you. We’ll update you on our research and make sure you understand what that means for you. We’ll introduce our healthcare team and be sure you know how they can help you. But it’s your voice that matters most.

We’ll encourage you to share your experiences. You may share symptoms you have experienced and how you managed them. You may share how you handle balancing appointments and childcare. You may also learn how others cope with negative or depressive feelings. The intent is to help you understand your diagnosis and find meaningful methods to continue to live fully from the people who understand your journey the most – others living with a rare brain or spine tumor. 

NCI-CONNECT Community Facebook Group

How to Join

You can join NCI-CONNECT Community by visiting the Facebook page and requesting to be a member. You’ll be asked a couple questions to ensure the group is right for you. You must also agree to follow our community guidelines. These include:

  1. Respecting Everyone’s Privacy. Being part of this group requires mutual trust. Authentic, expressive discussions make groups great, but may also be sensitive and private. What's shared in the group should stay in the group.
  2. Following NCI’s Comment Policy. By commenting on the page you agree to follow NCI's Comment Policy. Comments that do not adhere to this policy may be hidden or removed.

In addition, we can’t provide medical or treatment advice and ask you to not share your medical data. If you’re seeking a second opinion or treatment advice, please contact us NCICONNECT@mail.nih.gov. Our private Facebook group is a community for you to connect with others with your similar diagnosis. Your moderators intend to help you build those connections. 

Meet the Moderators

NCI-CONNECT’s Kristin Odom, communications editor, and Brittany Cordeiro, advocacy liaison and navigator, moderate our Facebook group. They share educational posts, answer relevant questions, and encourage you to share.

Odom manages communication projects, strategies, and initiatives to educate and inform patients, providers, researchers, and advocates. Odom has also, unfortunately, been impacted by cancer. She was a caretaker for her identical twin sister who passed away from a rare cancer and is currently a caretaker for her husband who is undergoing treatments.

Cordeiro facilitates partnerships with non-profit organizations who share a common concern for improving the outcomes of patients with rare brain and spine tumors through awareness and education. She has also helped be a caretaker for her brother who is living as a quadriplegic after suffering a spinal cord injury. 

Both Odom and Cordeiro are vested in providing the best community experience for people who join NCI-CONNECT Community. They hope each person will share and make connections. No one should feel alone in their journey with cancer.

Why Facebook Started

NCI-CONNECT Community was started after hearing from our patients in our clinic who attended CARES. Patients and their caregivers shared their need for more support and educational information. They desired to be connected with others with the same diagnosis.

“Often, after a CARES meeting, I see patients still talking in the lobby or exchanging information to continue conversations,” says Alvina Acquaye, NCI-CONNECT's Health and Wellness Counselor.

We realized patients and their caregivers needed more opportunities to connect in a private environment.

Acquaye

We encourage you to join NCI-CONNECT Community. No one should be alone in their journey with cancer. You can also follow us on Twitter @NIHBrainTumor or subscribe to our newsletter for updates and information on advances in rare brain and spine tumor research, treatment, and education from our experts.

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