The 2025 CHI Family Conference in Philadelphia happened to be held during a gorgeous stretch of weather. Jennifer Schmitt, CHI’s COO, and I traveled together by car from Glen Ridge, NJ, arriving around noon on October 3, ready to set up at the Philadelphia Sheraton University City on the edge of the Penn campus and a short walk from CHOP. One by one, members of our staff arrived from around the country.
We work virtually, so coming together for a conference has the added benefit of actually being able to work together in person. Even 10 years ago I would never have expected that the experience of using Teams tools to simulate being in an actual space together would be satisfying, or would even work, but it is truly tremendous how we are able to be productive and collaborative using virtual office technologies. Even so, when we do actually come together, at a CHI event, the experience of working together in person is always joyful and special. Four of us met at a Sansom Street restaurant where we grabbed lunch to bring back to the Sheraton, after which we worked on conference set up.
We were greeted with hugs from Margaret and Theresa of the Sheraton staff. I first met them in 2003 when we held the first HI family conference, planned by CHOP, at this very hotel. Since then, every single time we have held a conference at the Sheraton, they have been the main meal servers at our event. I was hoping against hope they would still be there, and they were! This is a connection I would NEVER expect to have, year after year, and adds to the magic of the CHI CHOP family conferences.
After setting up at the Sheraton, half the staff headed over to the Leonard and Madlyn Abramson Pediatric Research Center at CHOP to set up for Saturday’s main conference sessions.
Tai, Kristen, and I stayed back to put the finishing touches on our conference presentations for the Saturday sessions.
People started to arrive at the Sheraton for the dinner around 6. There are a bank of connecting rooms that are named after Ben Franklin. We were in “Ben 3-4-5.” Since my son is Ben, coming back to these rooms year after year always gives me a chuckle. Ben was 7 years old at the first family conference and has attended almost all of them with me and my husband, Mark.
I love the first night of the conference because of the instant connections people make, people who have come from near and far. It is like a big family reunion except there are always new families affected by HI, and researchers who have joined biotech teams, and new fellows and clinicians. The HI community keeps growing. Because of the shared rare vocabulary that constitutes the language of HI, combined with a true understanding of the burden of living with this disease, and gratitude toward the medical professionals, researchers, and CHI board members, there is an instant bond that is felt, even by the people attending the conference for the first time.
We even had children of three separate researchers join us, ranging in age from 9 to adult. I think this shows how compelling and interesting the researchers find the conferences to be. They want their own family members to experience it.
Saturday morning we all headed to CHOP for the conference sessions. I walked over with a couple of members of the CHI staff and one of the HI families. What used to be a relatively uncomplicated path through the Penn campus turned into a trip through an active construction zone. Even so, there was a walking path to Abramson, however, meandering. Through a labyrinthine passageway amidst new buildings in various states of development, we somehow managed to get to the back of Abramson, but it was locked. We got worried that we would be late. Magically, there was a bell to push, and someone actually let us in, even though it was a Saturday.
For the 29 years we have been coming to CHOP for Ben’s treatments and family conferences, CHOP has been undergoing constant growth to keep up with the rapid pace of increased knowledge, capability, and scale.
At Abramson, we had 4 main spaces; 1) The conference room where we had the main sessions, 2) the children’s room, where the kids played, supervised by professional childcare workers, 3) the Lobby where we gathered for breaks and to view the HIStory posters, and 4) the cafeteria where we gathered for meals and small groups.
The CHOP Congenital Hyperinsulinism Center is always a fantastic partner in putting on the conferences. The presentations from CHOP on the history of HI research and care, screening, diagnosing, and managing HI were all superb. The guest speakers from another HI Center of Excellence, a renowned neonatologist, and innovative biotech researchers added even more depth to the content. Finally, the presentations from the HI community members and the CHI staff brought the patient voice and experience to the conference. Three mothers shared their children’s journeys, and what is remarkable is how resilient each child and family is, and how they cope and move forward despite the heavy load that HI is. The HIGR presentations were great because they reflected on each of the topics shared and presented by the physicians, adding the community experience to all of the topics. “Ask the Experts” provided an opportunity for individuals to ask their most burning questions of HI specialists.
Small groups are the time to connect on a more personal level with parent peers, other adults with HI, and experts. These groups are organized around the type of HI care individuals are receiving, and special topics like HI at school, managing stress, deep dive into genetics, feeding and nutrition. We even had a Dad’s group.
So, what were the kids doing while the adults were learning? They were in a room right next door to ours, playing, supervised by experienced babysitters. They also had some special sessions planned just for them, including a hands-on experiment with strawberries designed to learn about DNA, and a special reading of a book written especially for the siblings of kids with HI, called, “Rare but Just Right.”
Saturday night we had a dancing party at the Sheraton, with a DJ, and a festive dinner. It was so nice to see the kids having a blast with each other. Some of them had met before at previous family conferences and had become fast friends. Others were here for the first time. It was just so lovely to see these bonds forming, and to see the parents and grandparents also having a great time.
Sunday we had a group experience over breakfast where we did a “Life Hacks with HI” session. It was amazing to hear all the ways the HI community mitigate the difficulties and find ways to cope. One of the best parts of the discussion was the participation of the kids. People shared their favorite snacks for lows, how they avoid compression lows, and how they relax.
Saying goodbye is always hard, but luckily we are already starting to plan the next CHI family conference.
