Hidden in Plain View: The Stories Behind Rare Neurologic Disorders

BELFAST, Maine - EntSun -- Some of the rarest genetic conditions are linked to the vacuolar‑ATPase (v‑ATPase), a protein complex essential for cell health. When v-ATPase is dysfunction, affected cellular processes manifest as seizures, developmental delays, and other neurological complications. Because these symptoms often resemble more common disorders, families frequently face misdiagnosis, delayed treatment, and limited recognition in clinical and policy settings.

To confront these challenges, Rare Awareness Radio, in collaboration with the non-profit v-ATPase Alliance, is launching a six‑part podcast series featuring advocates, clinicians, researchers, and caregivers. The series seeks to raise awareness, accelerate research, and build understanding of v-ATPase-associated disorders and the broader rare disease landscape.

Rooted in the Alliance's mission to build community and drive therapeutic development, each episode explores a different stage of the v-ATPase journey—from the uncertainty of early diagnosis to the promise of scientific innovation.

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Hosted by Richard Juknavorian, the series features in‑depth conversations that illuminate both the personal and systemic dimensions of rare disease. "Storytelling is one of the most powerful tools we have in public health," Richard shares. "When we bring forward the voices of caregivers, scientists, and families living with rare disease, we do more than raise awareness—we create momentum for equity, research, and action."

Featured guests include:

• Kristin Klenzendorf Anderson, founding director, caregiver, advocate
• Ana Rita Moreira, founding director, caregiver
• Dr. Luis Miguel Oliveira, executive director, caregiver, researcher
• Beth McKenzie and Dave Robertson, caregivers
• Dr. Bruce Morimoto, drug development strategist
• Dr. Angel Aledo Serrano, neurologist and epileptologist

Echoing Richard's sentiment, Ana Rita Moreira, Founding Director of the v‑ATPase Alliance, emphasized the urgency of collaboration. "For ultra rare diseases, every family's story and every piece of data is precious, but our time is not unlimited. This series is a vital act of collaboration, bringing the urgency of the patient journey into conversation with the promise of molecular science. It delivers the essential message: we are not waiting; we are building scientific solutions ourselves. The hope this series provides is rooted in action."

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The first episode premieres December 8, 2025. Rare Awareness Radio is available on SoundCloud, YouTube, Audible, iHeartRadio, Apple Podcasts, and Amazon Music. Episode links can be found at rareawarenessradio.org.

To learn more, please visit https://vatpasealliance.org/ and https://www.principledresources.com/rare-awareness-radio.