FTD Brothers | Two Brothers, One Quest: 33 Marathons in 33 Days

Who are the FTD Brothers? I’ll confess flat out here: I didn’t expect to be writing about two Irish brothers running 33 marathons in 33 days, across 32 counties in Ireland. But then I learned they both carry a 99.9% chance of developing frontotemporal dementia, which took their mother away from them way too young.

And then I realized that they’ve known this for a few years, and yet they keep running anyway.

This isn’t a heartwarming sports story, it’s something else entirely, and it fits right in with the stories we’re telling here via the frontotemporal dementia documentary.

THE TEST THAT CHANGED EVERYTHING

If you take even just a few minutes to research frontotemporal dementia, whether that’s reading through stories here on our site or diving deep into the medical side at places like the Mayo Clinic, here’s what most people won’t immediately understand about frontotemporal dementia: it used to be a mystery.

You watched a parent decline. You watched them disappear. And then they died, and sometimes you never really knew why it happened.

Science has changed that thankfully. Genetic testing can now tell you with near-certainty whether you will develop inherited FTD. Not “might” develop mind you… WILL develop. It’s a completely different universe than the “mystery” days.

Enter Jordan and Cian Adams, the two brothers who took that test in 2023, several years after losing their mother to the disease back in 2016.

Both took the test… both tested positive. Both learned they have a 99.9% chance of developing the disease in their 40s — the same age range their mother Geraldine was diagnosed before it eventually took her life at 52.

Sadly, FTD also claimed eight of Jordan and Cian’s thirteen cousins too.

And yet these two brothers decided the answer to a genetic death warrant was to run across an entire island raising both awareness and funds for the fight.

We’ve seen plenty of responses to the devastating FTD diagnosis. Denial. Anger. Retreat. Compartmentalization. But we haven’t seen many people choose to positively weaponize their own catastrophe into something that might save strangers.

FTD BROTHERS SHINE A LIGHT ON IRELAND’S QUIET EPIDEMIC

FTD has devastated Ireland in ways that don’t make headlines. Gene Moriarty, the central figure in our documentary, was Irish. The Adams brothers trace their connection back to Longford and Leitrim, their grandmother’s birthplace. These aren’t random coordinates. They’re proof that certain genetic faults root themselves deep within specific bloodlines, anchoring a family to a landscape across generations.

This disease has a way of doing that. It clusters within family trees. It hides. It kills people in their prime and leaves entire lineages scarred in ways that outsiders may never fully understand.”

What strikes me about Jordan and Cian’s reception across Ireland is that it’s not just about the running. It’s recognition. Many people in Ireland know what FTD looks like because they’ve lived through it… they’ve watched it take their parents, their aunts and uncles, their siblings.

Jordan Adams said something that stuck with me: “When you grow up in England, you can sometimes feel apprehensive talking about your Irish connection. But people here have really connected with the fact that we have a genuine, heartbreaking connection to this place.”

The brothers arrived as outsiders, and Ireland responded by saying: “You’re not outsiders. You’re ours. And you’re saying out loud what we’ve been suffering in silence.”

That recognition matters. It changes the conversation from abstract disease to lived reality, and here at Change the World Films we wholeheartedly applaud the tremendous efforts of Jordan and Cian that we’re witnessing from across the pond.

THE FTD BALANCING ACT: RESEARCH VS. MUCH NEEDED SUPPORT

Here’s the uncomfortable part, and I’m going to say it directly: the Adams brothers have raised over €1 million. That’s significant. That’s real. But the question I’m not sure anyone is asking is where does that money actually go? The exact same always goes for us.

From what we know, they’re raising funds for dementia research and support services. FTD Foundation. Alzheimer’s Society Ireland. Good organizations. But here’s the conversation I know we all need to have in this space: How much of the work being done by those organizations is actively moving toward a cure, and how much is supporting families currently dealing with the disease in a loved one?

I’m not asking this to be cynical. I’m asking for two very specific reasons, so please bear with me, as this is incredibly important:

1. Because the FTD Brothers have a 99.9% chance of developing FTD themselves.
This isn’t charity. This is survival. They need a cure, not just awareness. They need research that produces treatments that actually work before their 40s arrive. That’s completely understandable.

That’s the difference between a fundraising campaign and a mission. When you’re carrying a genetic time bomb, you don’t dream about “support services.” You dream about a drug that stops the protein folding. You dream about a therapy that reverses decline. You dream about the disease becoming something treatable instead of terminal.

Research has made some incredible strides, particularly recently. The FTD Brothers ability to even take that genetic test are proof of such advancement. But in this landscape, we need to clearly understand just how far along FTD research is. We need best case timelines so Jordan and Cian (and anyone else with a current or future diagnosis) have a real idea about progress… and dare I say it, about hope.

We also need to know what any real obstacles in this space are. Is more funding needed, or is this just a matter of time, not money? That’s a very important question since best estimates indicate that research (finding a cure/treatments) receives the lion’s share of funding, typically ranging from 70% at the low end to 85% on the high end.

Caregiver support and education make up the remainder, which brings me to my other very specific reason…

2. We are connected to a caregiver support group of over 70,000 members (Dementia the Journey Ahead) that regularly communicates the same, urgent message: families and caregivers are overwhelmed and incredibly under-supported.

From stepping back into this space and going much deeper than we did at the initial start of our documentary, this message rings loud and clear. It’s something I personally feel passionate about at this stage of our project, especially after hearing Susie Scarff and Gabi Chadwick both echo the sentiments from the group they administer so passionately themselves.

A core part of our focus going forward is to address this, but to do so with the reverence that research for a cure and treatments deserve as well. It’s a delicate situation, but we cannot ignore the massive imbalance that’s letting so many people suffer without adequate assistance.

In the next few weeks, we’ll be digging into the state of FTD research as part of our own path here, and it’s something I’d personally love to discuss with Jordan and Cian.

FTD BROTHERS: THE ROAD FORWARD

What we’re exploring with our FTD documentary is exactly what these brothers are experiencing: the personal devastation of a disease (intimate family stories), the science that now lets us see it coming, and the question of what we do with that knowledge.

The synergies are obvious. Their fundraising platform. Our narrative reach. Their lived experience. Our documentary lens. Their family’s Irish roots. Our connection to Gene Moriarty’s story.

Change the World Films exists to tell stories that move people to action. The Adams brothers ARE the story — two men racing against their own biology.

Once their marathon run of marathons is complete, we’ll reach out to Jordan and Cian to see if they’re interested in a conversation. I see real potential for collaboration here, and even if there isn’t, I’m so very, very inspired by their story and will certainly mention it in the documentary where appropriate.

The FTD Brothers have already written themselves into the history of frontotemporal dementia, with an honesty and courage that will continue to inspire all of us.

Go n-éirí an bóthar leo — may the road rise to meet them.

You can learn more about the FTD Brothers efforts on their GoFundMe page:
https://www.gofundme.com/f/theftdbrothers

PHOTO CREDITS: FTD Brothers GoFundMe page