Still Around: Peer Support Program for Brain Tumor Survivors

***$25,000 total goal***

$5,012 raised outside of gofundme

STILL AROUND

Still Around is a proposed non-profit organization staffed by brain tumor survivors that will provide free short-term care coordination services for people in the Boston, MA area recently diagnosed with a brain tumor.

Every day people are diagnosed with a medical condition that is accompanied by a shortened life span. This news can be devastating, and take a significant toll on mental health in addition to the physical effects of treatment. Overwhelming emotional experiences can lead to self destructive behaviors, which only serve to compound any current health issues. We believe that reaching people shortly after they receive a life-altering diagnosis and providing informed care coordination based on lived experience will help people set themselves up for success post-diagnosis. In addition, Still Around will provide jobs to people in the brain tumor community, who often face underemployment and significant economic hardship.

What is care coordination?

A care coordinator helps connect people with key supports, both socially and within the health care system. They also serve as a point of communication for health care providers and help arrange and organize a variety of services, including disability benefits, housing, and person-centered care planning. In addition, they provide education and resources about medical conditions, treatment options, and health management and act as an advocate within the health care system.

Why are care coordinators important for the brain tumor community?

There is significant stigma around brain tumors and brain cancer. Many in the community feel isolated and alone, as those without knowledge of the condition may consider a brain tumor diagnosis to be a death sentence. Although the diagnosis can lead to early mortality there are also survivors that far outlive the initial timelines given to them by doctors, family and friends. Treatments for brain tumors often result in chronic disabilities that effect daily tasks, yet many people in the community have not been connected to the general disability services and supports that already are in place.

What are the goals of Still Around?

Still Around will provide free short-term care coordination to people in the Boston area that have recently been diagnosed with a brain tumor. All care coordinators will be brain tumor survivors, and will be able to use their lived experience when discussing recovery and the use of services and supports. Care Coordinators will work with referrals on a short term care plan that involves setting up initial connections with both community and medical providers. When necessary, services will end with a warm handoff to a long-term services and support coordinator or other similar service.

What will this fundraiser pay for?

Who am I?

I was diagnosed with an incurable Astrocytoma at 24 years old. I have spent the decade-plus since navigating chronic disabling conditions while working in the human services field. I was a care coordinator for Boston Center for Independent Living for 6 years and currently facilitate an advisory board for Community Care Partners (a MassHealth care coordination program) and provide trainings for care coordinators working for Vinfen, Bay Cove, MCCN and more. I would be a volunteer trainer and part of the advisory board for Still Around. I also run a community focused live music series called Illegally Blind.

STILL AROUND - FUNDRAISER EVENT

There was a fundraiser event at The Armory in Somerville on May 18 and there will be another one soon. Thank you for your support!