Brain Matters

TBC is a youth-led nonprofit dedicated to illuminating the path for those affected by misdiagnosed, undiagnosed, and rare neurological conditions by creating compassionate spaces for advocacy, education, and storytelling -- because every voice deserves to be heard and valued

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FAQ

We are a youth-led nonprofit dedicated to raising awareness, building compassionate communities, and advocating for individuals affected by rare, misdiagnosed, and undiagnosed neurological disorders. Our core mission is to empower unheard voices and ensure equitable access to care.

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150+

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Trusted Globally

100+ Stories

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Our Mission

Championing rare neurological conditions through research, awareness, and support.

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Advance Compassionate Care

Our commitment extends beyond awareness. We support equitable access to diagnosis, treatment, and support, advocating for a healthcare system that prioritizes the unique needs of every individual. We connect families with vital resources and promote ethical, sustainable practices for a healthier brain future.

Ignite Collaborative Innovation

The future of neurological health lies in collective effort. We foster dynamic collaborations between researchers, medical professionals, and patient organizations, accelerating knowledge discovery and the development of breakthrough treatments, especially for rare diseases. Join us in shaping a brighter tomorrow.

Amplify Unheard Voices

We believe every story holds immense power. Through our platforms, we provide a safe space for patients and caregivers to share their experiences, turning personal journeys into powerful narratives that inspire empathy and drive change. Your story, your voice, can light the way for others.

Customer reviews

Discover what our clients think about our service

Andy Stevenson is known for being the co-founder and head of fundraising at Reverse Rett, a UK-based charity focused on accelerating treatments for Rett syndrome. He transitioned from a career as a PGA golf professional to become a full-time rare disease advocate after his daughter was diagnosed with Rett syndrome

" I'd rather have hope than sadness tattooed on my arm."

"Nothing should be settled. Not in science at least. And the reason is that if we find that anything is settled, then we stop thinking."

Dr. Alberto Espay is known for his work as a neurologist and a leading advocate for precision medicine in the field of neurodegenerative diseases. He is recognized for challenging traditional diagnostic models and promoting personalized treatment approaches

Dr. Nianwei Lin is known as a scientist, entrepreneur, and leader in rare disease research. He co-founded IXcells Biotechnologies, which specializes in preclinical drug development services with a focus on IPSC-derived cell models for rare disease research. He also serves as the Chief Scientific Officer of the Hope for Rare Foundation.

"The rare disease research is challenging, but every small discovery can make a huge difference for patients."

"Advocacy, doing your own research, coming forth with questions no matter how stupid or ridiculous they may seem... it's the only way you're gonna get answers and find common ground with people."

Lauren McDermott is known as an advocate, speaker, and a rare disease warrior living with Stiff Person Syndrome (SPS). She has transitioned from a career in real estate to becoming a lone wolf advocate, raising awareness about SPS, disability rights, and the urgent need for public health care reform.

Tracy Kirby is known as a nationally recognized advocate and nonprofit leader with deep expertise in rare disease fundraising, event coordination, and comprehensive family support within the neurological disorder community. She currently serves as the Director of Development at the National MPS Society.

"The most important thing is for families to know they are not alone in this journey. Rare diseases may be rare, but together, we are not."

"Nothing should be settled. Not in science at least. And the reason is that if we find that anything is settled, then we stop thinking."

Ralf Schmid is known for his work as the Associate Director of Preclinical Research at Novartis, where he has dedicated his career to advancing breakthrough therapies for neurological conditions. He has worked on gene therapies and gene editing approaches for diseases like Rett syndrome, ALS, and glioblastoma, and his team has successfully used CRISPR gene editing therapy in the Angelman syndrome mouse model.