Every Voice Deserves to Be Heard.
We are a non-profit foundation dedicated to empowering marginalized Chiari Malformation communities through the transformative power of voice, providing education, resources, and a platform for expression.
Our Story is One of Courage and Community.
The Chiari Voices Foundation was born from a simple yet profound idea: to amplify the voices of those who have been silenced. Whether due to social, economic, or personal barriers, many individuals and communities lack the platforms and skills to be heard.
We work tirelessly to dismantle these barriers. Our team is comprised of passionate educators, mentors, and advocates dedicated to providing the necessary tools that enable individuals to advocate for themselves and their communities.
Our Guiding Purpose
Every action we take is guided by a clear and unwavering commitment to a more equitable and expressive world.
Our Mission
To ensure every person affected by Chiari is heard, believed, and supported through a community dedicated to validation, education, and advocacy.
Our Vision
A world where every Chiari patient receives a timely diagnosis and compassionate care without having to fight to be believed.
How We Achieve Our Mission
We create lasting change through a focused, three-pillar approach designed to build skills, confidence, and opportunity.
Peer Support Network
The first and most critical program is the creation of a safe, private, and moderated online community. This space will be where patients can share experiences, ask questions, and find solace in a community of peers who understand their journey without judgment.
The "Validated Voices" Project
This program is a cornerstone of the organization's identity. Highlighting these narratives, the organization validates individual experiences into a supportive community, building a powerful repositories of evidence against medical dismissal and creating compelling content for advocacy and fundraising.
Curated Specialist Directory
A direct response to the founder's own struggle, this program will involve creating and maintaining a simple, crowdsourced, and carefully vetted list of neurosurgeons, neurologists, and other specialists who are known within the patient community for their expertise and, crucially.
Be the Spark: Our Founding Goal
Every great movement begins with a single act of support. As we launch our mission, you have the power to be the catalyst for change. Your contribution will help us achieve our first critical milestones.
Make Things Official
Help us apply for licenses and permits where necessary. Optimally, we can achieve this by the end of the year.
Gather "Chiari Warriors"
Your support will help us recruit, train, and match needs with participants ready to grow their confidence with public empathy.
Launch Our Digital Platform
Enable us to build a simple but powerful online space to share the first wave of stories from our courageous participants.
Help Us Launch!
Support our initial fundraising goal to get the Chiari Voices Foundation off the ground and start making an impact.
Join Our Board of Directors
We are looking for passionate individuals who are committed to the cause. If you want to make a large impact on a marginalized population, consider becoming a Board Member Champion.
Our Commitment
"To ensure every person affected by Chiari is heard, believed, and supported through a community dedicated to validation, education, and advocacy."
Who We Are Looking For
- Strategic thinkers with non-profit or corporate governance experience.
- Passionate advocates for patient rights and healthcare equity.
- Individuals willing to leverage their networks for fundraising and growth.
Get In Touch
Have questions, want to volunteer, or partner with us? We'd love to hear from you.