Tag Archive for: TK2d

A front porch at dusk lit by a green porch light for Mitochondrial Disease Awareness Month

Mitochondrial Disease Awareness Month: what it is, and how to take part

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If you found this page because a building near you turned green, or because someone in your family was diagnosed and September suddenly means something new, welcome. This is a plain guide to what happens each September, who runs it, and the small things a family can do, in September or any other month.

Nothing here asks anything of you. Some families want a walk and a crowd. Some want a green bulb in the porch light and no conversation about it at all. Both are taking part.

Two names, and both of them are correct

You will see this time of year called two different things, and it is not a mistake.

World Mitochondrial Disease Week is a global campaign held each September, hosted by International Mito Patients (IMP). It is the name used by the United Mitochondrial Disease Foundation in the US, the Lily Foundation in the UK and Mito Foundation in Australia.

Mitochondrial Disease Awareness Month is the Canadian framing. MitoCanada treats all of September as awareness month, with the week sitting inside it.

So the week is the campaign and the month is the container. If you are looking for events near you, search for both, and check each organiser’s page for that year’s dates.

Light Up for Mito

During the week, buildings, bridges, town signs and ordinary front porches around the world are lit green. The campaign is called Light Up for Mito, it is run by IMP, and green is the colour the mitochondrial disease community has settled on.

You do not need a landmark. IMP’s own suggestion is simple: change your home light to green, or set a smart bulb to glow green.

  • Put a green bulb in a porch light, a window, or a lamp facing the street.
  • Take a photo and share it with #LightUpForMito.
  • Ask a local building. IMP publishes a toolkit with a template invitation letter and a template press release you can send to a town hall, hospital, museum or church. A single lit building tends to bring a little local press with it.

If a neighbour asks why your porch is green, you now have a reason to say the words “mitochondrial disease” out loud to someone who has never heard them. That is genuinely how awareness spreads.

Putting yourself on the map

IMP runs a Global Mito Map, an interactive map where patients, families, organisations, researchers and light-up locations each add a pin. If your family’s experience of this disease has mostly been the feeling of being the only ones, seeing the pins is a reasonable answer to that. Check IMP’s World Mitochondrial Disease Week page to add your own.

Walks, gatherings and ways to join in

Each of the big organisations runs something through September, and most of it changes from year to year, so we point you to their pages rather than listing dates that will go out of date:

Links to each are in the Sources list at the end of this post.

One piece of real news, stated plainly

Awareness campaigns tend to attract announcements, and it is worth being careful about which ones mean something. Here is one that does.

Kygevvi (doxecitine and doxribtimine), made by UCB, is approved for TK2 deficiency. The US Food and Drug Administration approved it on 3 November 2025, for adults and children whose symptoms began on or before age 12. A marketing authorisation for the European Union followed on 26 March 2026, granted under exceptional circumstances after a European Medicines Agency opinion.

Here is the honest framing, because it matters more than the headline:

  • It is a treatment for one mitochondrial disease, TK2 deficiency. It is not a treatment for other forms of mitochondrial disease, and it will not help most families reading this.
  • It is not the only recent approval, and it is not the first. The FDA granted accelerated approval to Forzinity (elamipretide) on 19 September 2025, six weeks before Kygevvi, to improve muscle strength in adults and children with Barth syndrome weighing at least 30 kg. Earlier, in 2023, it approved Skyclarys (omaveloxolone) for Friedreich’s ataxia. Each treats one specific condition, and which of them counts as “the first” depends on how narrowly mitochondrial disease is drawn, so we are not calling any of them the first. For a community used to hearing there is nothing, three approvals between 2023 and 2025 is not nothing.

If you want to know whether anything in this category is relevant to your family, that is a question for your metabolic or genetics specialist, and only for them.

Be equally careful the other way. Clinics advertising “mitochondrial infusions” or IV mitochondrial therapy are not offering what the approved and experimental science above describes, and awareness season is exactly when those adverts get louder.

How many people are we talking about?

Mitochondrial disease is often described as rare, and individually most forms are. Collectively, IMP puts it at roughly 1 in 5,000 people, around 1.5 million worldwide, citing prevalence work published in Annals of Neurology in 2015. It can affect any organ, at any age, with almost any symptom, which is precisely why it takes so many families years to get a name for what is happening.

If you are new to a diagnosis

There is one practical thing worth doing, in September or any other month, and it takes about an hour.

Write down what a stranger would need to know about your child, or about you, in the first five minutes of an emergency. Not the full medical history, just the five minutes. The diagnosis. The medications and the doses. What must not be given. What a metabolic crisis looks like in your particular case and what should happen first. Who to call, and who is allowed to make decisions.

Then work out where that document lives, and whether a paramedic in your driveway at 2am can actually get to it. A folder on the kitchen counter fails that test if the emergency happens at school. A page in a wallet fails it if the wallet is in the car.

That is the problem AdyAid was built to solve: a health profile with a short link you control, which you can hand to a school nurse, a babysitter, a camp, or a responder, and which is current because you updated it once rather than photocopying it eleven times. It was built by a family who needed it themselves, which is why the first thing it asks you for is the part a stranger needs, not the part a specialist wants.

You can see how it works if that would help. And if all you manage this September is a green bulb in the porch light, that counts too.

Nothing on this page is medical advice. Every treatment question in it belongs to your metabolic or genetics specialist. Awareness week and awareness month dates are set each year by the organisers listed below, so check their pages for the current year’s events.

Sources