Team

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Vice President + Chief Marketing Officer

He spent much of his childhood dealing with unexplained migraines. Doctors cycled through medications, but nothing worked. He grew up in a small town with two blue-collar parents who instilled simple values early on: be a man of your word, show up, and do the work.

By 13, he had his first job and was selling anything there was demand for, learning early how to identify problems and create solutions.

At 17, he was diagnosed with Chiari Malformation. The choice was stark—undergo brain surgery or risk paralysis. He chose the most invasive option and committed fully to recovery. Through years of ups and downs, he became obsessed with incremental progress, ultimately making a full recovery and getting into the best shape of his life. The experience left him deeply grateful and permanently changed his perspective.

Now at 28, he has led teams of 20+ people and built retention marketing systems for businesses generating millions in revenue. Today, he works on automated systems for USPS, applying a root-cause approach to problem solving. His most important mission, however, is helping people who are silently suffering with Chiari. Having lived through the isolation himself, he is driven to make the journey easier for others whenever possible.

Treasurer

With years of experience as a Financial Consultant, Cezarae brings a steady hand and a sharp eye to our financial strategy, ensuring every dollar works as hard as our volunteers. He’s the voice in the room reminding us that fiscal responsibility and big dreams can — and should — go hand in hand. 

Cezarae has a knack for turning complex budgets into clear, actionable plans (and occasionally into sports analogies). Outside the boardroom, he plays flag football and rec league basketball, mentors entry level associates on planning for the future, and insists that spreadsheets can, in fact, be beautiful.

He has personally been impacted by Chiari when his stepson received surgery for Chiari Malformation. Cezarae later went through his own brain surgery for Meningioma. Since these events; championing awareness has become personal passion.

Director

With over 20 years of experience working with UK charity commissions, she has had the privilege of serving on numerous boards of trustees and supporting organizations to make a meaningful difference in their communities. 

She is passionate about helping people get their lives back on track — whether through practical budgeting advice or providing guidance during challenging times.

 Her personal journey with Chiari began in 2008, and although she has not undergone decompression surgery, it has deepened her empathy and commitment to supporting others facing health challenges.

She believes in understanding every perspective before making judgments and strive to bring balance, compassion, and clarity to everything I do.

Secritary