By Danielle Cameron, IBC Network Foundation Canada

This fall has been a blur.

I don’t say that lightly. I mean it in the truest sense. It feels like every major conference, scientific meeting, meetup, and symposium decided to land within the same tiny window of time.

And as a patient advocate, especially from a country still building its national IBC presence, it’s felt like this constant voice in my head saying:

“You need to be there.” “You can’t miss this one.” “This is important.”

And it truly was. All of it. But wow, it came at a cost.

I’ve called in more favours than I’d like to admit.

My kids have said, “You’re going away again?” far too often. I’ve missed hockey games and will miss my daughter’s winter dance recital. My husband and I have been two ships passing in the night.

There were delayed flights, long nights of catching up, and constant mental juggling.

It truly has taken a village. My family, my friends, my board, fellow advocates – just to make this fall possible.

But it has been worth it.

Let me be very clear: I’m not a scientific expert. I’m a knowledge seeker who keeps showing up. I don’t pretend to understand every research term or catch every nuance on every slide. But I do understand what it means to live with IBC, the gaps patients face, and why these conversations matter. That’s the perspective I bring into the room.

What I am is a learner. A patient. An advocate.

Someone who wants to understand how the systems around us shape IBC and how patients and community can shape them back.

And what surprised me most this season is this:

Patient advocates aren’t just welcome in these spaces – we matter in them.

We ask different questions.

We connect dots others don’t think to connect.

We give context to the research — the “why” behind the science. Our stories shift conversations.

And researchers welcome that and take that seriously.

I’ve felt that at every single conference and it’s empowering and inspiring. This fall wasn’t just about content. It was about people.

Women from different provinces and countries who walked into my life unexpectedly and stayed. These connections are special.

Just the other day, an IBC sister I met at a past Ultimate IBC Meetup reached out about a rare side effect. Something I struggled with for years before finally getting diagnosed. She remembered me mentioning it and asked what medication helped. I sincerely hope that conversation spares her the years of discomfort and exhaustion I went through.

These friendships aren’t superficial. They matter and I genuinely look forward to staying connected and seeing where our paths cross again.

And the connections extended beyond patients:

• research students who I hope will carry IBC forward in their future work
• a patient mentorship program I joined at a friend’s suggestion
• a meaningful conversation with Elizabeth Holmes from the Canadian Cancer Society about Canada’s lack of IBC data
• Ellyn Winters offering to add IBC to the Ask Ellyn app
• An invitation to have my story and IBC featured on a blog
• and an inspiring Tea for Advocacy event in Ottawa that sparked early plans for a Canadian IBC workshop or conference

So much meaningful work starts with a single connection. This season included:

IBC Connects Conference

A research-rich meeting with key insights on disparities, surgical challenges, and recurrence. Guideline-concordant care for IBC has actually decreased over the past decade (33% → 24%), with older women and Black women less likely to receive proper treatment. Early work on ctDNA, GLP-1 for lymphedema, and AI tools showed promising directions for the future.

Health eMatters

A training conference focused on building stronger, more effective advocates. I learned how to use AI, Instagram, and LinkedIn strategically to extend reach and measure impact, along with practical skills in government advocacy, responsible pharma collaboration, and crafting a clear elevator pitch or “ask.” It opened the door to future collaborations across the rare cancer space.

Ultimate IBC Meetup

The heart of this event was the connection. Being surrounded by so many IBC patients, sharing experiences, strength, and a level of understanding you can’t find anywhere else. The lab tours were incredible; not just seeing the space and equipment, but hearing directly from the scientists about ctDNA, personalized medicine, and the questions shaping future IBC care.

Leading the stage IV breakout was a privilege and made me realize how powerful we are when we come together.

Canadian Cancer Research Conference (CCRC)

Energizing and hopeful. Hearing the latest Canadian cancer research made me realize how much opportunity exists for IBC-specific research and patient partnership and how much work we still have ahead to build an IBC presence nationally.

Nurse Practitioners of Ontario & Canadian Association of Midwives Conferences

We shared IBC educational resources with hundreds of frontline clinicians – the people most likely to see early symptoms first. These conversations can genuinely change the path of a patient’s diagnosis.

Breast Cancer Survivorship Conference (upcoming)

My first conference alongside our scientific advisors, Dr. Rana and Dr. Tran. Survivorship is a major challenge for IBC patients, and having the IBC voice represented here is incredibly meaningful.

SABCS (upcoming)

One of the largest stages in breast cancer research. I’m excited to be there alongside Terry, Carol, and so many brilliant researchers representing our community in global conversations that can shape the future of IBC research and collaboration.

Why showing up matters

IBC advocates need to be in these rooms. We need to be seen and heard.

We need relationships with global researchers.

We need to make sure IBC is included in every important conversation, not an afterthought. And the more I show up, the more I see that every connection matters:

• the researcher who remembers your story
• the advocate who introduces you to someone
• the patient from another country who shares something you needed to hear
• the scientist who suddenly says, “Let’s talk about IBC”
• the email that leads to a conversation that leads to an idea that leads to collaboration

This is how change begins.

Not all at once, but through a network of people who care, who connect, who share, who show up.

The hardest part? I learned more than I’ve had time to process.

I have pages and pages of notes. Screenshots.

Emails.

A list of people to follow up with. Ideas I want to bring home.

There is so much potential.

So many conversations buzzing in my mind.

And I haven’t had the time yet to organize or share it all.

But I will.

What the IBC community should know

I don’t do any of this because it’s easy. I do it because it matters.

Because connection creates possibility. Because patient voices carry weight.

Because no single advocate, not me, not anyone, can do this alone.

It truly takes a village. A global village.

And this fall, I saw that village everywhere I went.

The scientific world can feel big and intimidating, but there is so much hope, so much potential, and so many people willing to work with us when we simply step into the room.

And that’s what I’ll keep doing:

Stepping into rooms I never imagined. Representing patients who can’t be there.

Building the connections that might one day change everything.