I’m Matt Danskin, dad to Jack (7), Harriet (4) and husband to Ella. Jack is living with Batten disease (CLN3), diagnosed in May 2025. In July, I travelled from Melbourne to Chicago to attend my first BDSRA Family Conference, with the incredible support of my wife and our family back home.

To be honest, I wasn't quite sure what to expect.

I'd spoken to families online, had conversations with people involved in Batten disease and followed the research relatively closely over the last 18 months, but this was the first time I was going to be in a room with so many people who actually understood what life with Batten disease is like.

It was daunting.

Walking into the conference was overwhelming, but from the get-go there was support. Not in a pushy or over-the-top way, but just there if you needed it. A nod, a smile or a conversation.

The first session I attended when I arrived was the "New Family Orientation" on Thursday afternoon for first-time attendees. I met Brendan and Michelle and their three children. Eva is 12 and affected by CLN3, like Jack. They were diagnosed five years ago and had only come because their two other children wanted to come and meet other siblings.

What courage.

Courage that would be on show by so many for the duration of the weekend.

An inspirational welcome address by Sharon King on Friday morning set the tone for an amazing weekend. The tears flowed. I wasn't far from a packet of tissues all weekend, and that's OK. If you get an opportunity to watch Sharon's welcome, I encourage you to do so, along with any part of the conference available via recording.

Over the course of the conference there were sessions and events for everybody, all weekend. You could tap in or out depending on what interested you, come and go, and there was no pressure. There was morning yoga, prayer sessions, grandparents gatherings, sibling (SIBS) events, parent peer-to-peer group sessions, research sessions, Q&As, Ask an Expert, dinners, drinks — you name it.

There were some extremely powerful moments.

"The Lived Experience" was one of them, where we heard from Tammie Hill (CLN2) and Alexander Padalka (CLN3), both adults living with Batten disease and both outliers of "the norm". Their insight into living with Batten was a great listen and could be extremely valuable to our community.

We also heard from Maya and Xavier James, teenage siblings living with CLN2 and being treated with Brineura. They both shared their feelings about life, the disease and how treatment with Brineura affects them.

It was so insightful and extremely emotional. Their courage, like all these kids, is so empowering.

Our men's peer-to-peer group was also inspiring.

A group of men sitting around talking about their lives and their feelings. The highs and lows, the positives and the challenges.

It was so far out of my comfort zone, but an amazing way to connect with these men. It will be something I'll hold onto for a long time, especially when the going gets tough.

I had a dinner on Friday night for the CLN3 parents, hosted by Craig Benson from Beyond Batten. It was a low-key affair where we could chat and enjoy each other's company.

It was fun. Funny.

Craig is a Texan, a dad of a Batten child and a driver of what is happening with the CLN3 Batten-1 trials. I'm optimistic naturally, and being surrounded by these people made me even more so, but Craig reminded us that it hasn't always been this way.

There have been periods where the hope has been non-existent, or the faintest of light at the end of the longest tunnel. A bit like this disease, the trajectory isn't linear over the journey.

Thankfully, we have people like Craig who don't give up. Even through periods of little hope, they push, challenge and drive towards the cure we are longing for.

The highlight of the weekend was the banquet on Saturday night.

Seeing the Batten children parade with their siblings, parents and caregivers, followed by plenty of dancing and good times. Smiles were aplenty and the vibes were high.

Even in the toughest of journeys, there is still time for joy.

It was great.

Sunday morning was tough.

The Celebration of Life Memorial was exceptionally challenging. I wanted to be there to show my support to all the Batten Angels and their families. You can't help but think what these kids and young adults' lives would have been like, and what great things they could have achieved.

It was one of the hardest hours of my life and the starkest reminders of why I was there.

But also a stark reminder to live every moment and make as many amazing memories, big and small, with my family.

The biggest takeaway wasn't a particular presentation or piece of research.

It was the people.

On one side we have the kids. The parents. The grandparents. The siblings. The carers.

Seeing the resilience of these families was something I'll never forget. There were some incredibly difficult stories, and there were definitely moments where the reality of what we're all dealing with hit like a sledgehammer.

But the courage and determination shown every day is awe-inspiring.

On the other side, we have the researchers, clinicians and governing bodies. People working independently in their own areas, but increasingly coming together with a shared purpose.

This doesn't just happen.

It takes great people, great leadership and a willingness to collaborate, share ideas and challenge each other to keep moving forward.

After spending the weekend listening to these people and seeing the work happening behind the scenes, I came away feeling that we have some incredibly talented people in our corner.

I left Chicago exhausted emotionally, but my batteries were charged to help try make a difference, with a much better understanding of what we're facing, a huge amount of respect for the people fighting alongside us, and, most importantly, a renewed sense of hope.

The road ahead won't be easy.

But after spending a weekend surrounded by these people, I know we're not walking it alone.

 

Kind regards,

 

Matt Danskin.