This grant proposal outlines the Mind the Cure Living With Brain Cancer Research Program, submitted to the Euel Corbin Foundation. The proposal describes a community-based initiative designed to support brain cancer patients and their families throughout the full arc of the disease — from diagnosis through death and into bereavement. Key strategies include collaborative community and government agency partnerships, online resources, fundraising, and peer support events. The program's philosophical core draws on mindfulness and "living in the moment" principles, supported by clinical research, to help patients and families maintain positive, present-focused lives despite a terminal prognosis.
The Mind the Cure Living With Brain Cancer Research Program is submitted for consideration by the Euel Corbin Foundation. Methods utilized in this initiative include community support collaborative research methods, which serve to compile data and document milestones achieved in assisting individuals and their families living with brain cancer. Because the prognosis for brain cancer is that of near-certain eventual death, there is no way to measure specific "outcomes" in the traditional sense; however, milestones can be measured by setting realistic and achievable support goals for the patient and their family as they navigate the health trajectory of living with brain cancer.
This initiative will also provide supports for the patient's family following the death of the patient, assisting these individuals through the grieving process and helping them cope with their loss as they work toward rebuilding their lives.
The strategies used to achieve the goals of this initiative include highly optimized, technology-enabled collaborative efforts among various community agencies and government offices that provide assistance in various forms. Included are area hospitals, clinics, participating physicians and staff, an online support and resource directory, brain injury resources, books and brochures, and an online family helpline.
These collaborative partnerships are designed to ensure that patients and their families have seamless access to the range of services available to them throughout the course of the disease.
This initiative will utilize government grant funding and charitable contributions to support the services offered by the program. Fundraising events such as marathons and other community-based campaigns — including those organized in local schools and businesses throughout the region and across the United States — will supplement this funding.
Charitable contributions will also be used to purchase advertisements that spread awareness of the program, familiarizing the public with who the program is and what it seeks to do for patients and families living with brain cancer.
"Events, website, and shared patient stories"
The program's resource website will contain self-reported case study information submitted by patients and their families, relating the program's accomplishments, the reaching of milestones or goals, and the overall assistance provided during the course of the patient's life — and ultimately at the time of death. This caregiver resource infrastructure is intended to be a living document of the program's impact and a source of hope for newly enrolled participants.
The philosophical roots of the program are based on the perspective known as "living in the moment." This outlook is illustrated in journalistic coverage of a St. Petersburg artist named Woo, who is living with brain cancer. Woo's technique for coping with his diagnosis is straightforward: he lives in the moment, painting colorful fish and reflecting on his father, whom he lost to cancer at age 50. Woo recalls his father's philosophy: "Life is short. You got to take advantage of it when it's here." (Koinkenberg, 2011).
Just as Woo uses his passion for painting to remain present, individuals enrolled in this program will be assisted in discovering what enables them to live in the moment. This assistance will come through focus group discussions and multidisciplinary medical team therapy designed to help patients set meaningful goals and realize them in their daily lives — enabling a positive and fruitful existence even while coping with brain cancer.
The work of David N. Korones (2010), "Living in the Moment," published in the Journal of Clinical Oncology, supports this approach. Korones notes that mindfulness techniques "appear to be effective in helping patients cope with pain, disability, and stress… physicians and patients can learn mindfulness techniques in a series of sessions devoted to gaining an understanding of this discipline and how to practice it." Korones further explains that mindfulness assists the individual in focusing attention, creating mental distance from distressing thoughts, and restructuring their relationship with time.
The work of Rebelein and Rebelein (2006), Living for the Moment, also addresses this process by relating the story of an individual who suffered and died from pancreatic cancer yet lived her life to the fullest, surrounding herself with family and friends. The philosophy of living for the moment places the mind and thoughts of the individual firmly in the present, enabling focus on the "here and now" rather than on an uncertain or frightening future. This program's philosophy is rooted in life rather than in approaching death, and it encourages individuals living with cancer — and their family members — to focus on today with a positive outlook, cherishing the life they are living in the present moment.
"Expected benefits for patients and families"
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