Rare disease app turns day-to-day tracking into a clear health story for people living with mitochondrial disease
When our family started our journey, tools like MyMito didn’t exist. Partnering with MitoAction to put MyMito in patients’ hands is exactly what we set out to do.”
— Blaine Penny, Former CEO & Executive Advisor, Lumiio
NOVI, MI, UNITED STATES, November 9, 2026 /EINPresswire.com/ -- MitoAction, the national nonprofit supporting children, adults, and families living with mitochondrial disease, and Lumiio, a digital health company specializing in real-world data platforms for rare disease communities, today announced the launch of the redesigned MyMito app. MyMito has been the mito community's health companion for years, and the new MyMito, rebuilt on Lumiio's next-generation platform, is a free tool for patients, built specifically for mitochondrial disease and shaped at every stage by the mito community. The app helps families log symptoms, medical events, and daily measures in minutes, then share an organized health journey with their care team.
Mitochondrial disease can touch nearly every organ system, and it rarely looks the same two days in a row. Families coordinate care across numerous specialists, try to untangle overlapping symptoms, and walk into appointments relying on scattered notebooks, spreadsheets, and memory to explain what’s changed. MyMito replaces that patchwork with one tool, built around the realities of life with mito, so families can manage their care with confidence and document what each day really looks like.
Blaine Penny, Former CEO and Executive Advisor at Lumiio, is a mito parent who co-founded the MitoCanada Foundation and led Lumiio as CEO for five years. The mito community drove MyMito's design through MitoAction's close ties to families, and Blaine's lived experience made building it a priority for Lumiio.
“Families living with mito have always been the real experts on this disease. The new MyMito puts that expertise to work,” said Kira Mann, CEO of MitoAction. “In Lumiio, we found a partner who shares our commitment to putting patients at the center. Together, we rebuilt the app around what families told us they need, from daily check-ins, symptom tracking and a Care Card they can take to any appointment, anywhere. Every family who takes part adds to a collective voice that helps researchers and clinicians better understand day-to-day with mito. This is just the beginning of our plans with MyMito.”
The new MyMito brings seven functions together in one tool, allowing families to manage their complete mitochondrial disease journey, all in one place:
• Health Tracker: quick daily or scheduled check-ins for symptoms, measures, and health events, on each family's own terms.
• Health Insights: trend charts that turn day-to-day logs into a clear picture of health over time.
• Health Journal: simple entries built for the real ups and downs of living with a chronic illness.
• Care Contacts Directory: the whole care network, from physicians and specialists to support providers, organized in one place.
• Streamlined Calendar: upcoming appointments and health journal together in a single view.
• Shareable Care Card: a one-page summary of diagnosis, medications, allergies, contraindications, and emergency contacts, ready to show in the app or export as a PDF for emergency care, school, or travel.
• Reporting: a download of each family's data, ready to share with members of the care team.
MyMito is free for patients, and families stay in control of their information. It was co-created with the mito community through listening sessions, prototype reviews, and beta feedback from people living with mito and their families, and its symptom and measure list was developed with MitoAction. That process isn't over: feedback from families will guide each new version as more features roll out.
"When our family started our journey with our son Evan, tools like MyMito didn’t exist. We pieced together appointments, symptoms and specialists largely on our own. That experience is why Lumiio committed to developing practical tools for the mito community, tools that help navigate their journey and support their care pathways. Partnering with MitoAction to put MyMito in patients’ and caregivers’ hands is exactly what we set out to do, and I’m proud of what both teams have delivered." said Blaine Penny, Former CEO and Executive Advisor at Lumiio.
Availability
The new MyMito app is available now on the App Store and Google Play; search "MyMito." Current users can tap "Bring over your previous account" and sign in with the same email they used before, and their symptoms, measures, profile, and login details come with them. New families can get started at mitoaction.org/mymito.
Michael Green
MitoAction, Inc
+1 888-648-6228
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