Rare shouldn’t mean forgotten.

We are Adam and Hannah, and two of our children, William and Scarlett, live with an exceptionally rare mitochondrial disease caused by changes in the TTC19 gene.

TTC19 deficiency affects mitochondrial Complex III, part of the system our cells rely on to produce energy. For William and Scarlett, that can mean difficulties with movement, balance, speech, energy and independence.

One of the hardest realities for families affected by TTC19 is that there is currently no established disease-modifying treatment that can stop or reverse the condition.

Because TTC19 is so rare, there are also major gaps in what is known about it and very little research focused specifically on the disease.

That is why we have created the TTC19 Research Initiative.

Our aim is to help build the foundations for more TTC19 research by bringing together evidence, researchers, clinicians, families, data and potential research opportunities.

Our first target is £5,000.

Donations could help support areas such as:

• TTC19 and mitochondrial research

• research tools and disease models

• scientific datasets and computational resources

• collaboration with researchers, clinicians, universities and laboratories

• building clearer TTC19 research resources

• connecting TTC19 families and researchers

• establishing the Initiative properly

We are still at an early stage and we do not yet know exactly which projects every pound will support. We would rather be open about that than make promises before the right scientific opportunities have been identified.

Any exploratory research we undertake will be treated carefully, and where something looks promising, we want it reviewed by people with the right scientific and clinical expertise before making any claims or major decisions.

The TTC19 Research Initiative is currently being established and is not yet a registered charity.

For us, this began with William and Scarlett. But we want it to become something that helps every family affected by TTC19, now and in the future.

£5,000 will not develop a treatment. But it can help us start building the foundations from which meaningful TTC19 research can grow.

If you are able to donate, even a small amount will help us move this forward.

If you cannot donate, please consider sharing this page. With a disease this rare, reaching the right researcher, scientist, company, family or supporter could be just as important.

Thank you for helping us give TTC19 a louder voice.

Rare shouldn’t mean forgotten.

Adam & Hannah

TTC19 Research Initiative

www.ttc19research.org