What a full year 2025 has been for Congenital Hyperinsulinism International and the global HI community! Together, we’ve made remarkable strides in research, awareness, and support. None of this would have been possible without the strength and dedication of this amazing community.
As we close out the year, we are sharing the highlights and milestones that shaped 2025. But first, let’s take a moment to look back at everything we’ve accomplished since our last newsletter reached your inbox.
CHI continues to promote hyperinsulinism awareness through our Juice Box Campaign. What started out as a homemade t-shirt by HI mom Brianna has blossomed into an international movement with support from Notre Dame students on campus and HI parents and artists Deepti and Shubham. We have so enjoyed watching your Juice Box Challenge videos, whereby our supporters sip their juice or preferred rescue treatment to get the word out on social media. For more information on the campaign’s origins, how to get involved, and our adorable “A Juice Box Saved My Life” merchandise, visit our webpage.
In early December 2025, CHI CEO Julie Raskin and COO Jennifer Schmitt hosted a booth at the Hot Topics in Neonatology conference to bring CHI’s message of Glucose as a Vital Sign to the broader neonatology community. Recognizing the critical importance of early detection, they emphasized the need for research into the best approach to universal screening for congenital hyperinsulinism. As part of this effort, CHI presented a scientific poster entitled “Limitations of Current Screening Guidelines for Neonatal Hypoglycemia,” highlighting gaps in existing practices that have led to neurodevelopmental outcomes that could be improved with universal neonatal glucose screening and proper medical and/or surgical management of HI. Julie also had the opportunity to sit down with Ben Courchia, Podcaster for “The Incubator,” to make the case for universal screening of all newborns. You can watch it here.
The success of our 2025 Sugar Soirée will allow us to continue our lifesaving work in 2026. Thanks to our dedicated volunteers, auction supporters, attendees, donors, and sponsors, CHI raised $235,000 towards our mission of improving the lives of people with HI around the world. We are incredibly grateful to everyone who contributed to the tremendous success of this event! To view our photo slideshow and recap of the event, please visit our webpage here.
Now, let’s recount what we’ve accomplished together throughout 2025.
2025 has been a monumental year for CHI’s research initiatives. This year alone, we have been part of the author team for 5 research articles. April saw the publication of “Global Disparities in Congenital Hyperinsulinism Care” in ScienceDirect; in May, the CHI Collaborative Research Network’s “Developing a congenital hyperinsulinism prioritized research agenda: a patient-driven international collaborative research network” was published in Frontiers in Endocrinology; in August, Frontiers again published the ground-breaking “Real-world experience with the use of diazoxide among people living with congenital hyperinsulinism and their caregivers”; in October, The Endocompass Project was released by the European Journal of Endocrinology; and in December, MIDIRS published “Neonatal hypoglycaemia: consider hyperinsulinism!”, available to the public soon.
We exhibited and presented scientific posters at many research conferences, including scientific meetings hosted by the European Society of Endocrinology (ESPE), the American Diabetes Association (ADA), Pediatric Endocrine Society (PES), National Organization for Rare Disorders (NORD), The Chan Zuckerburg Initiative (CZI) Rare as One (RAO) summit, and the Diabetes Technology Meeting. Our presence at these scientific meetings brings the patient perspective of living with hyperinsulinism to the attention of broader medical societies, allowing us to share information on the best HI care practices and resources with the medical community. Several of the scientific posters from these conferences sharing our research are available to view here.
Our patient registry, the HI Global Registry (HIGR), continues to drive progress in understanding congenital hyperinsulinism! This year alone, we began our participant appreciation program to encourage registration, launched the HIGR Ambassador Program to allow HI patients and parents to directly share the registry with their community, updated three surveys to capture more detailed information on topics that still require further research, and created a new 6-month check-in survey to track changes in HI management over time. In terms of direct impact on HI research, HIGR has had 11 data requests fulfilled, 1 research publication, and 5 conference posters. We have learned so much about HI during HIGR’s first six years, and we can’t wait to share more with you in our 2025 Annual Report in January – stay tuned!
After our annual convening in Lisbon in February, members of the CHI Collaborative Research Network (CRN) have been actively supporting research, awareness, and support projects worldwide. Our CGM group is proud to share that they are in the final stages of developing a transformative CGM white paper. Our patient advocacy group released “HI Care Guidelines Simplified,” a lay version of the International Guidelines for the Diagnosis and Management of Hyperinsulinism, providing an easy-to-read resource for families and medical professionals to better understand the official guidelines. The patient advocacy group is also hard at work creating a letter-writing campaign for HI families to reconnect with the hospitals where their children were born to communicate the importance of timely recognition of hypoglycemia; we will share more information on how to participate in the new year!
The LightCure Project has made significant progress in 2025. With a new website, recruitment underway for the quality-of-life study, and continued work on the science behind the exciting new medical imaging possibilities, CHI is incredibly honored to be part of this consortium.
As part of our participation in the LightCure project, CHI and a creative team from Wolfstreet created our short documentary film: Turn Hours into a Lifetime. The film provides insight into the journeys of three hyperinsulinism families from around the world, highlighting the importance of detecting and treating severe hypoglycemia early. We are grateful to the LightCure Grant and the European Union for making this film and partnership possible.
CHI continued to work with biotech companies including Hanmi, Rezolute, Zealand, Rhythm, and Dexcom, bringing the patient experience to pre-clinical and clinical researchers, while sharing drug trial opportunities with the HI community.
There continues to be a great need for new drug development because there is only one treatment, diazoxide, that has been approved for HI, and it is effective in only a subset of people with HI, and HI families want and need more options. At CHI’s 2025 family conferences, some of the companies in the drug development space shared their progress. Last week, disappointing top-line results from Rezolute’s Phase 3 sunRIZE were reported. In the December 11 press release Brian Roberts, Rezolute’s Chief Medical Officer, shared “…there are aspects of the results that merit additional investigation, and we are conducting a thorough evaluation to gain a better understanding of the study outcomes, which will inform our path forward,” adding that, “We are deeply grateful to the patients and families, the majority of whom have continued into the open label extension part of the study, as well as to the investigators and site teams who participated in this important study.” You can read the full press release here. Due to the high unmet need, this study is of tremendous importance to CHI, and we will remain in communication with Rezolute to learn about its next steps and to provide opportunities for the community to learn and ask questions.
CHI directly supported future HI pilot research by riding in the Million Dollar Bike Ride (MDBR). It is always such a treat to gather with Team CHIbra in Philadelphia and ride together for research! To view photos from the event, please visit our webpage. So far this year, we raised just over $43,000 for the pilot research grant, which will be used for research on a new approach to newborn screening. We will be announcing more information about the pilot research grant in January. The full grant is $75,000, so we are hoping to make up this difference through donations from supporters made in the last days of this year. You can support this research here!
We tackled access issues head-on with our new Continuous Glucose Monitor (CGM) Access Program. Through a partnership with Dexcom, we now provide CGMs to individuals with HI in the US who would benefit but lack access to them. For many with HI, CGMs can be extremely helpful for identifying glucose trends and detecting hypoglycemia in between glucometer checks, especially overnight. At this time, the program is only open to people with HI who live in the US, but we hope to be able to expand this program in the future. Learn more or apply online to determine eligibility.
Our family conferences continued to unite this close-knit community, connecting families to medical professionals, the latest research, and, perhaps most importantly, to one another. In May, we held our family conference in Copenhagen, Denmark with the team at the distinguished CHI Center of Excellence Odense University Hospital. This event offered a rare opportunity to meet HI families and experts from Scandinavia and beyond. You can explore an overview of the event and enjoy a photo slideshow here, and watch recordings of the presentations here. In September, we met again with our long-time partner and Center of Excellence, Children’s Hospital of Philadelphia (CHOP), to co-host our US conference. This was a wonderful reunion for CHI, renowned doctors and nurses, and the new and familiar faces from the patient community. Visit the links to view photos and presentations from the event.
With your support, CHI spread awareness of congenital HI with campaigns throughout the year. For February’s Rare Disease Day campaign, we shared quotes from countless families from across the world describing the ways in which life with HI has been “more than you can imagine.” We encourage you to read their responses here! Later in the year, we promoted the importance of Glucose as a Vital Sign in honor of Hyperinsulinism Day on June 7th. HI families submitted their first recorded blood glucose, along with a photo and a quote, highlighting the impact of severe hypoglycemia compared to normal blood glucose ranges. You can read more about HI Day here. As part of this awareness day, we also released updated materials for families newly diagnosed with hyperinsulinism, with steps for action, opportunities to connect, and more.
Thank you for joining us in recounting this monumental year for Congenital Hyperinsulinism International. We are so grateful each and every day for the strength and camaraderie of this hyperinsulinism community; with 2,680 members on our family Facebook page, 63 members of our Collaborative Research Network devoted to the cause, and the support of 6 research, biotechnology, and device partners, CHI feels the power of your support.
If you would like to help CHI continue our life-saving work, please make a donation in these last few days of 2025 to ensure a strong start in the new year.
