Your experience. Better trials. Better outcomes.

If you or a loved one has been impacted by cocci meningitis, you can still contribute to our effort. You can share your story or perspective in video, written, or oral form. Your contribution will help shape the Voice of the Patient/Caregiver meeting report.

Please email Rob Purdie: rpurdie@fightfungus.org

Thank you to our supporters!

Now available. Archived Meeting Recording.

MyCARE Foundation – Externally Led- Patient Focused Drug Development Meeting

CNS Disseminated Coccidioidomycosis (Cocci Meningitis) – Archived from April 14 2026

Why this meeting matters

The MyCARE Foundation brought together patients, caregivers, clinicians, researchers, industry partners and regulators on Tuesday, April 14, 2026 for a dedicated session on central nervous system (CNS) dissemination of Coccidioides (Cocci meningitis). As noted on FightFungus.org, while many infections of Cocci may resolve, the disseminated/CNS form is a high-impact condition with serious outcomes and long-term care needs.

Watch the Cocci meningitis community share lived experience, surface unmet needs, and shape the future of treatment development, diagnostics, and support pathways.

We are currently preparing a “Voice of the Patient/Caregiver” summary and it will be shared with developers and regulatory bodies.

Still want to join the discussion? Learn about additional ways to share your voice as well.

View the meeting recordings

Full Meeting

 

Individual Clips

   
   

Why your voice matters

The journey of CNS Cocci is often hidden, under-recognized, and highly variable. As described on FightFungus.org, many patients live with long-term sequelae and need frequent follow-up, yet there are limited data and few treatments formally approved.

By sharing your story, you help ensure that the patient voice becomes a central pillar in therapy development and regulatory evaluation—not just an afterthought.

What Is an EL-PFDD Meeting?

An EL-PFDD meeting is a unique opportunity that puts patients, their families, and other direct caregivers at the center of drug development conversations. The goal of this meeting is to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, and academic researchers an opportunity to hear perspectives from individuals with Cocci meningitis on the health effects and daily impacts of their Cocci meningitis, treatment goals, and decision factors considered when seeking out or selecting a treatment.

This meeting was conducted as a parallel effort to FDA’s PFDD initiative to more systematically gather patients’ perspectives on their conditions and available therapies to treat their conditions. Your input can help the FDA, medical product developers, clinicians, and academic researchers make better informed decisions during drug development and during review of marketing applications for potential treatments, shaping decisions that affect the entire coccidioidomycosis community.

An Interview with Brynn Carrigan

Brynn Carrigan served as a co-moderator for our upcoming meeting. Below is a clip from our recent interview with Brynn.

In addition to being a patient, Brynn is the Director of the Kern County Department of Public Health and brings a unique perspective that helps raise awareness of Valley Fever. To view the full interview, please visit our Patient Video page or our YouTube channel.

For additional Valley Fever stories, please visit the Kern County Public Health website.

 

About MyCARE Foundation

The Mycology Advocacy, Research & Education (MyCARE) Foundation is the first pan-fungal patient-advocacy organization, dedicated to giving a voice to patients with serious fungal infections and their caregivers.