Research Programme
Active projects, mechanism, phenotype, therapeutic landscape and the research roadmap.
Explore the research →Research • Collaboration • Funding • Awareness
Rare shouldn’t
mean forgotten.
The TTC19 Research Initiative is building a focused research programme for TTC19-related mitochondrial Complex III deficiency. We are bringing together families, clinicians, scientists and supporters to help accelerate credible progress.
A family-founded initiative with a research-first mission.
01Research
Build the evidence base and identify credible therapeutic opportunities.
02Collaboration
Connect researchers, clinicians, families and organisations.
03Funding
Create routes to fund targeted research-enabling work.
04Awareness
Make an ultra-rare disease visible enough to attract action.
Why TTC19?
Ultra-rare should not mean under-researched.
TTC19 is a nuclear gene linked to mitochondrial respiratory-chain Complex III. Disease-causing variants can lead to severe, progressive neurological disease, while the tiny patient population makes conventional research difficult.
Understand TTC19 →Explore the initiative
One mission. Several ways to move it forward.
Learn about TTC19, follow the research programme, explore the evidence base and see how you can help accelerate progress.
Evidence Atlas
Search and filter TTC19-specific clinical and mechanistic literature by phenotype, variant, study type and year.
Search the Atlas →Our Story
The family origin of the initiative, why it exists and why the mission extends beyond one family.
Read our story →
Featured fundraiser • Christmas 2026
The Grinch has a new mountain to climb.
From Mount Crumpit to Yr Wyddfa (Snowdon): a winter fundraising climb for TTC19 Research Initiative, using a memorable Christmas challenge to raise awareness and support research.
WhereYr Wyddfa (Snowdon), Wales
WhenChristmas 2026, weather-dependent
WhyFundraising and awareness for TTC19 research
Upcoming campaigns & fundraisers
Awareness that leads somewhere.
From community challenges to major fundraising journeys, each campaign has one purpose: bring more attention, support and research momentum to TTC19.
19 September 2026
Green the Game for Mito
Join the community for Light Up for Mito by turning Pokémon GO gyms green or choosing a green buddy, then sharing a screenshot to help spread awareness.
See how to take part →
World Mitochondrial Disease Week
Paint It Green for TTC19
Paint a rock green, add #GreenForTTC19, place it in your community and share a photo to help TTC19 reach more people.
See how to take part →
Halloween 2026
Meet the Dinosaurs
A Halloween dinosaur experience raising funds and awareness for TTC19 Research Initiative.
More details coming soon.
Major challenge
Lowestoft → Newcastle
An ambitious long-distance fundraising journey from Lowestoft to Newcastle, created around one urgent mission: accelerating research for TTC19.
Full challenge details coming soon.
The mission
Personal urgency.
Scientific focus.
The initiative exists to make TTC19 easier to study, easier to understand and harder to overlook. We are careful to distinguish established evidence from research hypotheses and ideas that still need experimental validation.
See the research roadmapResearch priorities
Where focused effort can matter most.
Natural history. Understand progression and measurable outcomes.
Disease models. Build systems capable of testing rescue and candidate interventions.
Functional rescue. Ask whether normal TTC19 function can restore relevant biology.
Discovery. Prioritise therapeutic hypotheses and test them rigorously.
Get involved