IBC Connect Meeting

IBC Connect Meeting

It’s hard to even begin to describe what a powerful weekend this was for me—powerful on so many levels.

This weekend, MD Anderson hosted the inaugural IBC Connect meeting, a multi-institutional conference created to advance the standard of care for inflammatory breast cancer and to bring advocates, clinicians, and researchers into the same room for honest conversations about where we are—and where we need to go.

I’ve attended countless medical gatherings over the last eighteen years, including several focused solely on IBC. But this one stands apart. Its uniqueness deserves to be understood.

A New Kind of Conference

For twenty years, the Morgan Welch Clinic at MD Anderson has led the effort to establish a standard of care for inflammatory breast cancer—something our community still doesn’t have universally accepted. Their suggested standard has saved lives, and I’ve been proud to help push for its wider adoption.

Progress has been slow at times; IBC is rare, highly fatal, and difficult to study. Yet when best practices are followed, patients do better than those treated with generic breast cancer protocols.

“When best practice is applied, IBC patients do better—yet so few receive it.”

This disease is aggressive and deadly, but the strides we have made are real—and they’re worth championing.

Advocates at the Center

One of the most powerful elements of IBC Connect was the way patient advocates were included. They weren’t there just to tell personal stories—though those stories matter deeply. They were there to discuss their advocacy work: what has been effective, what they are building, and what they want others to join.

Julia Laursen framed it beautifully by asking each advocate to share their favorite thing they’ve done. Not a list. Not a résumé. A favorite. And just like that, the room lit up. Passion and purpose poured out of them. You could see people wanting to do more.

I was moved beyond words to see how many advocates had strong ties to the IBC Network Foundation. Traditionally, advocates align closely with a single organization. From the moment I founded the IBC Network, I wanted to break that mold. I wanted to connect:

doctors to patients

patients to researchers

researchers to funding

organizations to one another

“In a world where advocates are often siloed, it moved me deeply to see so many connected not just to their local efforts, but to the IBC Network Foundation. That vision of collaboration is finally becoming real.”

Collaboration in this field has not always come easily. But seeing it happen this weekend proved its power.

Breakout Sessions With Real-Time Problem Solving

Another unique part of the conference was the breakout sessions. Patients and doctors sat side by side, discussing what’s working—and what’s not. I joined the session on surgery, because that is where many women turn to me for help when things have gone wrong.

I shared what I see all the time: women receiving de-escalated care, which is not appropriate for inflammatory breast cancer. The women whose surgeons got it right never need to come talk to me. It’s the ones whose care went off-track who seek help.

As soon as I mentioned this, Dr. Lucci, (deputy director of the Morgan Welch Clinic) put his hand to his forehead and said, “The things I see are horrific.”

We talked about how this can still happen even though IBC is taught in surgical training. Somehow, in the current trend of de-escalation across breast cancer care, critical steps for IBC are being skipped. Sometimes the oncologist recognizes IBC, but the surgeon only hears “aggressive breast cancer” or “stage III,” and the word inflammatory gets lost. That single lost word changes everything.

“One lost word—inflammatory—can change an entire treatment plan.”

These conversations must be brought into papers, presentations, and education—and this weekend offered a rare space to address them openly.

Looking Ahead — Could We Take the Lead?

As the conference wrapped up, Dr. Wendy Woodward, the executive director of the Morgan Welch Clinic explained that MD Anderson hosted this first IBC Connect but hopes another organization will take the lead in future years—ideally one seen as more neutral, more “Switzerland,” so everyone feels equal at the table.

There was even conversation about whether the IBC Network Foundation could serve as the future home for this conference.

It’s an enormous undertaking. But not impossible.

We’ve learned so much from hosting four Ultimate Meetups. I have a background in conference management. Bringing an IBC-dedicated medical meeting into our foundation’s work could strengthen advocacy, education, and clinical care in powerful ways. It’s a challenge I take seriously.

A House Full of Advocates—and One Ten-Month-Old

On top of the formal conference, several advocates stayed at my house for the weekend—one with her ten-month-old baby. What a joy that was.

This woman had been diagnosed during pregnancy, after being repeatedly dismissed by doctors who insisted her breast changes were normal. This was not her first pregnancy and she realized that what was being dismissed as normal pregnancy changes, she pushed for answers until someone finally listened. The very day she received her official IBC diagnosis, she arrived home to a letter saying her mammogram was “all clear—see you next year.”

She is in treatment currently and doing well. Her baby is now ten months old and thriving. Their presence added an emotional weight to the entire weekend that I’m still unpacking.

It wasn’t just the infants. Advocates brought children of all ages, and I spent time with each of them. I played with a seven-year-old, baked muffins, and taught a fourteen-year-old two-step at my favorite local music spot, The Kenney Store.. These moments reminded me that the work we do isn’t just about treatment or research—it’s about the families, the joy, and the lives we are striving to protect.

Then Came the Boot Walk

And as if the weekend were not full enough, Sunday was MD Anderson’s Boot Walk.

11,000 people came out to stand against cancer, raising over $2 million.

Our IBC Wrangler Team placed third out of hundreds of teams. That is no small feat, and I’m grateful to be part of the committee behind it.

The Work You Don’t Always See

Several people staying with me commented, “I thought you spent most of your time fundraising.”

I told them the truth: only about twenty percent of my time is fundraising. The rest is spent in meetings—talking with doctors, strategizing, and pushing for real progress in IBC care. I serve on several committees, and I’m also a co-author on multiple medical papers, contributing directly to research and clinical guidance. I work on:

improving the standard of care

making the most of the new ICD code for IBC

identifying gaps in treatment

supporting and funding research

building collaborations

The public mostly sees the fundraising side of my work. I hope, in time, the behind-the-scenes efforts to advance the IBC standard of care will be equally recognized.

“People think fundraising is my main job. It’s not. Most of my time is spent pushing for better treatment, better recognition, and better outcomes for IBC patients.”

Moving Forward Together

It will take me weeks to fully process this weekend. But I am more certain than ever that the work we are doing matters. This is bigger than any one person or organization—it’s about building a community that can stand together, push for change, and save lives.

The advocates, the doctors, the researchers, the families—they all showed me what’s possible when we bring people together with purpose and passion. I’m ready to bring everything I have—and everything these eleven advocates have—into a stronger, unified effort to move the field forward.

Together, we are not just talking about change—we are creating it. We are building the future our community deserves: one where inflammatory breast cancer is recognized, treated properly, and ultimately defeated.

And this is only the beginning.

Photo caption:

“Forty-five minutes, just her and me. Nap-trapped and grateful, holding a future worth fighting for.”

Pulled quotes

“When best practice is applied, IBC patients do better—yet so few receive it.”

“In a world where advocates are often siloed, it moved me deeply to see so many connected not just to their local efforts, but to the IBC Network Foundation. That vision of collaboration is finally becoming real.”

“One lost word—inflammatory—can change an entire treatment plan.”

“These moments reminded me that the work we do isn’t just about treatment or research—it’s about the families, the joy, and the lives we are striving to protect.”

“People think fundraising is my main job. It’s not. Most of my time is spent pushing for better treatment, better recognition, and better outcomes for IBC patients.”