Brain Tumor Network Guides Patients and Empowers Care
Some months ago Brain Tumor Network was contacted by Rally Foundation who wanted to feature our organization in a featured blog post after hearing about the wonderful Navigation support one of their families received from our team. Read the full blog post on RallyFoundation.org:
Rally Mom Tiffany shared with Rally Foundation the outstanding support their family has been receiving from the Brain Tumor Network (BTN) for her son and Rally Kid, Logan: “BTN has been a wonderful resource for our family. They are responsive, knowledgeable and compassionate.”
BTN is the largest brain tumor patient support organization of its kind in the U.S. Since 2014, BTN has provided free navigation services to almost 2,000 patients. BTN’s pediatric brain tumor navigation program provides age-appropriate services for families with children under the age of 18 whose primary diagnosis is a brain tumor. BTN partners with care teams to meet each individual patient’s goal of care.
How BTN Helps
Led by Pediatric Neuro-Oncology Nurse Navigators, BTN’s pediatric services include:
- Diagnosis and treatment options education
- Treatment center identification
- Facilitation of second opinions with pediatric brain tumor specialists
- Personalized, nationwide clinical trial identification and assistance with enrollment
- Resources for family support
- Medical records collection and management
The Nuts and Bolts
Manager of Patient Navigation Kendra, shared, “People often reach out during one of the most stressful times of their lives, right after a diagnosis, and we are here to offer personalized ongoing support.”
“After calling BTN or completing the Get Support Form on our website, the BTN team will review and assess all needs and assign a navigator. The patients and their families will hear back from a BTN team member within 24 hours. Being able to connect with a person is invaluable. We know that hearing a person’s voice, having a human connection, is vital and provides comfort.”
“Most importantly, we want you to know that we’re here. We help families take this journey step by step, from start to finish. Our team is deeply knowledgeable about brain tumors and can be a guiding force. We understand that sometimes families need a lot of help right in the beginning to get through choppy waters, while others count on our expertise through different stages. We even have a translation service on call to help people for whom English is a second language. BTN can offer bereavement support and can help identify peer and mentor support as well.”
Notes Kendra: “We are very fortunate to be able to make an impact without any cost to the patient or his or her family. Our services are provided at no cost to patients, caregivers and healthcare professionals. Additionally, BTN does not receive funding from medical institutions or pharmaceutical companies and does not receive reimbursement or insurance coverage for services, resulting in the ability to provide completely unbiased services.”