Last Wednesday I returned from an unforgettable jam-packed 8 days in Copenhagen. I was there for 3 reasons: 1) To provide subject insight for the shooting of a documentary film about hyperinsulinism; 2) To co-create the CHI Family Conference in Copenhagen with Henrik Christesen and his incredible team at Odense University/Hans Christian Anderson Children’s Hospital, and 3) to attend, exhibit, and present at the first ever joint European Society for pediatric Endocrinology/European Society for Endocrinology (ESPE/ESE ) meeting.
Let me start by saying the city of Copenhagen is a jewel. The people of the city are welcoming, kind, and charming, and I delighted in their hygge (cozy and contented mood), which I am trying to emulate!
The first two days of the trip were spent at the movie set. The Dutch/Danish production company we are working with found a stunning and comfortable home to be the site of the movie. It happened to be the most beautiful week of the year with lilac, rhododendron, and wisteria all in full bloom (that never happens in New Jersey at the same time) The three HI families who are starring in the film are all magnificent truth tellers of the experience of living with HI. I cannot wait for you to see the completed film, which you will be able to premiere later in the year. In addition to the film being a work of art, it will be a wonderful tool to share the experience of living with HI.
Phase Two of the trip was the CHI Family Conference that was held in a Copenhagen hotel, the Scandic Spectrum, right on one of the main harbors of the city. Over 100 people, including individuals with HI and their families from many countries in Europe and the US, came together to learn more about the condition and how to live with it, and to make lifelong friends. Every conference has its own exceptional quality, and this one in Copenhagen was no exception. There were many highpoints, but for me, it was the family presentations that were moderated by Henrik Christesen, the lead physician at the CHI Center of Excellence in Denmark, which was the pinnacle. Each family described unique aspects of life with HI in their own original way. The evenings spent together after long conference days were incredibly special, and watching children with HI and their siblings bond is always priceless. I will always cherish the new people in the HI community I got to meet for the first time, and reuniting with old friends and acquaintances.
The third section of the trip was the ESPE/ESE Meeting. I had participated in 10 prior ESPE meetings, in person, since 2013, and this one was like no other. Why? Congenital hyperinsulinism was the focus of many poster and auditorium presentations. I don’t remember a time when there was such a focus on this rare disease. During a well-attended session on the work of EndoCompass to “shape research priorities in endocrine and pediatric endocrine science,” congenital hyperinsulinism was the condition that was used to exemplify the process. Not diabetes. Not thyroid conditions. Not growth hormone conditions. Not obesity. That was stunning. Even more remarkable was that the speaker sharing the example, Rade Vukovic, focused on the role of the CHI Collaborative Research Network (CRN) in the EndoCompass’ prioritization process. When the moderator asked Dr. Vukovic how the hyperinsulinism researchers were able to collaborate with the patients on such a project, Dr. Vukovic responded that it was easy because they had CHI, a patient organization that created a CRN, with endocrinology experts. “It was an easy-going collaboration and a fruitful process. A lot depends on how strong the patient organization is, and we were lucky.”
It was also the first ESPE conference where CHI was invited to present and to moderate talks with expert endocrinologists and geneticists on access issues faced by people with HI, globally. We also presented two scientific posters.
The final thrill was seeing the place of HI genetics (a marvelous presentation by Dr. Sarah Flanagan), future treatments (a superb presentation by Dr. Khald Hussain), and screening (a groundbreaking presentation by Dr. Henrik Christesen) in such a prominent position at the conference, with CHI’s CRN and HI Global Registry referenced multiple times.
That there is now a conversation on the importance of universal screening for HI at an international endocrine conference is a true achievement for all who are not yet born with HI. That there were close to a thousand people in the audience was a wonderful indicator that people in the field care about this issue. You can imagine I was a little short on sleep during my time in Copenhagen, but the long sunny days and wonderful company helped keep my energy up.
The CHI staff including Lily Barnett, Loren Lopez, Kristen Rohli, Jennifer Schmitt, and Lauren Van Arsdell, and our superb CRN partners and HIGR ambassadors, and the families who participated in the filming, made all three phases of this remarkable trip possible.
