TO IMPROVE THE QUALITY OF LIFE FOR BRAIN TUMOR PATIENTS AND THEIR FAMILIES AND TO RAISE FUNDS FOR BRAIN TUMOR RESEARCH SO THAT A CURE CAN BE FOUND.

We envision a day when the word "curable" can be uttered, and done so with believability. There are more than 120 types of brain tumors, many of which can morph from grade 1 (non-cancerous) to grade IV (cancerous/fatal). Even with a grade 1 brain tumor, the word "curable" is not uttered. A patient might hear the word "removed" the non-cancerous tumor, but it wasn't curable. Liken it to "we couldn't cure your broken bone, so we just removed it surgically". Removable of a mass is so different than curing your from getting that mass again. Flipside, if your tumor is cancerous, you won't hear the words "cured", but you might hear the words "no signs of growth". A day when a brain tumor patient can be told "your tumor is curable" would be amazing.

Source: Nonprofit submitted responses

Goal One: To expand program types and provide greater access to our monthly and bi-weekly brain tumor support group meetings.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.

Goal Two: To fund innovative and forward-thinking brain tumor research at the ground level (e.g. seed research which will result in greater funding from larger organizations like DoD, NIH, etc.

Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.

Goal Three: Improve our ability to connect brain tumor patients with respective organizations and resources which can provide solutions regarding treatment care & financial needs reimbursements.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.

Describe an investment in leadership

Each member of the SBTF Board of Directors and staff were asked to participate on at least one of our working Committees. The Committees range from Bylaws, to Securities, to Research Grants, to Patient Initiatives, to Scholarships and more. Committee work allows Board and staff members to become more ingrained, and more familiar, with core areas of our day-to-day business. Taking meeting minutes, updating forms and applications, and driving the basic level of day-to-day activities at the ground level provide heightened insights to what it takes to operate a not-for-profit organization. Committee participation, via virtual platforms like Zoom, teach tolerance and appreciation and affirm that businesses practices in the Corporate world don't necessarily translate to best practices in the non-profit world.

This organization mobilizes for mission in the following ways:

• Strategic Partnerships

• Networks of Collective Impact Efforts

• Raising Awareness

• Community Building

• Policy Advocacy

What are this organization’s external mobilizaton efforts?

We partner with other not-for-profit organizations, like the American Brain Tumor Association, Neurosurgery Research Education Foundation, AANS/CNS Tumor Section to identify, and subsequently fund brain tumor research. Our workgroup meetings & discussions with national and international brain tumor advocacy groups, like the International Brain Tumor Alliance, the National Brain Tumor Society, and the Society of NeuroOncology, resulted in the development of a comprehensive database with customizable search options, to assist patients in making informed decisions about where to seek treatment. Whether soliciting brain tumor proclamations at the local level during Brain Tumor Awareness Month, participating in the FDA Medical Imaging Drugs Advisory Committee (MIDAC) Meetings our Board and staff are raising awareness of our mission, and awareness of a disease which 700,000 Americans are currently living with today.

The continuation of the pandemic forced our support groups to remain as a virtual offering. Many of our support group members face difficulties with speech, memory, reading or other communication skills due to brain injury as part of treatment so the transition to a online platform initially posed some challenges. Despite the learning curve, and the growing need and desire for F2F interactions, our support group programs expanded in content and in audience reach. We launched two new types of support group meetings in 2021 and increased from approximately 25 meetings in 2020 to nearly 65 in 2021. Notably our support group related expenses dropped to a mere $10.30 for the entire year. The inability to meet F2F, and limitations of time generated by our virtual meetings, resulted in a marked growth in our "by invitation only" support group on Facebook. The Facebook platform allowed individuals to share 24/7, and not just during prescribed group meeting times. The Facebook support group, drove a need for additional content, and cast a wider net of participants from within the brain tumor community. Our virtual support group meeting platforms, and the social media outlets also generated greater sharing opportunities with similar non-profit organizations. Partnerships with these organizations were enhanced and collaboration opportunities blossomed. Sharing of time sensitive information, (e.g. where to get a COVID booster or an N95 mask), became more instantaneous. Individuals became connected outside the typical 50 mile geographical radius and expanded the appreciation for cultural or regional differences which can sometimes limit the availability of treatment for some, while not for others. Our 2021 story of adaptation to external changes happened organically; so totally unexpected yet so tremendously positive.