CamJAM 2026 recap: The hands that still go up

What so many of us carry

So many people in our community know what it feels like to leave an appointment with more questions than answers. To wonder how much of what you are seeing at home is related to the disease. To want information, but also to want someone who understands why you are asking.

I know those feelings too. My husband, Andy, lives with IgG4-related disease, and as his caregiver, I have sat in those appointments and carried those questions home. Through my work with the IgG4ward! Foundation, I hear the same feelings from patients and families everywhere. None of us should have to carry them alone.

At CamJAM, there was room for all of it: the questions, the worries, and the need to be with people who understand.

What we learned at CamJAM

Our hosts, Dr. Guy Katz and Dr. Cory Perugino, brought together doctors who care for people with IgG4-RD and work to better understand it.

Dr. Katz opened the day with an overview of IgG4-RD and the many ways it can affect the body. Then people chose the small group sessions that fit their own experience. Topics included the pancreas and bile ducts, the head, neck, and eyes, understanding diagnosis, treatment options, and living with the disease over time. 

In the afternoon, Dr. Perugino shared where IgG4-RD research stands today and what may be ahead. The day ended with an expert panel where people could ask the doctors anything and the audience asked many thoughtful, informative questions. 

Much of every session was set aside for that kind of conversation, and it made a difference. Sometimes another person asks the very question you have been struggling to put into words. 

Life beyond the diagnosis of IgG4-related disease

Leading our patient panel, The other side of the journey: Life beyond the diagnosis of IgG4-RD, was one of the most meaningful and impactful part of the day for me.

There is something powerful about giving the people living with the disease the space to tell their own stories, in their own words. We can learn about a disease from expert talks and medical facts. We also need to hear what it feels like to live with it. How it may change family routines. How it affects relationships, plans, and the way someone thinks about the future.

Each person’s story deserves to be heard without the pressure of speaking for everyone. IgG4-RD can look different from one person to the next. Hearing those differences helps us understand our community more fully.

While every story was different, people in the audience kept finding pieces of their own. As the panelists spoke, you could see people nodding, leaning in, and sometimes wiping their eyes. Many heard their own experiences in someone else’s words for the first time. 

That kind of recognition can bring a relief that is hard to explain. Someone describes what they have been through, and you think: “I have felt that too.” For many in the room, that moment was the beginning of a connection that continued during breaks and at the reception that evening.

What people take home

That connection is part of what people take home from a JAM. Along with new information and questions for their next appointment, many leave knowing someone else who understands, and who they can reach out to long after the day is over.

To me, this is what advocacy looks like. It means listening to people and making space for their voices. It means helping them find good, reliable information and find each other. It also means carrying what we hear forward, so that the experiences of our community help shape our programs, inform our partnerships with doctors and researchers, and guide the work of the IgG4ward! Foundation.

I am grateful to Dr. Katz, Dr. Perugino, and all the doctors who spoke, and to the panelists, people living with IgG4-RD, caregivers, and families who made CamJAM what it was. Every person who asked a question or shared part of their story helped someone else feel a little less alone.

Join us in Austin

If you have never met someone with IgG4-RD outside of your family, I hope you will come to TexasJAM.

TexasJAM | November 14 | University of Texas - Dell Medical School, Austin, Texas

Whether this is your first JAM or you have joined us before, you are welcome. Bring a family member, friend, or caregiver who supports you. You will spend the day learning from doctors who specialize in IgG4-RD and connecting with people who understand what it is like to live alongside it.

If you were with us in Cambridge and are able to join us, please do! Some people in Austin will be raising their hands for the first time. It means so much to be welcomed by someone who once raised theirs.

REGISTER FOR TEXASJAM

Planning is already underway for 2027, and we look forward to sharing more soon.

To those who raised their hands at CamJAM, I am so glad we were in that room together. I hope we will see you, and welcome some new faces, in Texas.