Dear Reader,
Summer is in full swing and so is our mission. At Congenital Hyperinsulinism International (CHI), we are pleased to share some of the most important milestones from this past quarter. From groundbreaking research initiatives and powerful advocacy efforts, to life-changing support for families affected by hyperinsulinism, this quarter has brought remarkable progress. Join us as we recount these important achievements and the impact they have on our community.
In May, the HI community came together in Copenhagen, Denmark, for an engaging and impactful family conference. With the support of Dr. Henrik Christesen of Hans-Christian Andersen Children’s Hospital, this event offered a rare opportunity to meet HI families and experts from Scandinavia and beyond. Families and HI physicians joined us from over ten countries to share knowledge, foster connections, and learn from one another. You can explore an overview of the event and enjoy a photo slideshow here, and watch recordings of the presentations here.
CHI continued to raise awareness about HI to the broader academic/scientific and advocacy community at a number of important professional gatherings. In the past two months, we attended and had scientific posters accepted at the European Society for Pediatric Endocrinology (ESPE), Pediatric Endocrine Society (PES), American Diabetes Association (ADA), and the Chan Zuckerberg Initiative (CZI) Science in Society Conference.
At ESPE in Copenhagen, DK, we had three posters accepted: “Feeding Issues: An Under-recognized Complication in People with Hyperinsulinism,” “Testing a Continuous Glucose Monitoring Assessment Tool for Congenital Hyperinsulinism,” and “Collaborative Global Advocacy to Improve the Lives of Children and Families with Congenital Hyperinsulinism.” CHI also presented a Voice of the Patient Session where Julie Raskin and Lauren Lopez were joined by Dr. Nino Khedlaze, Dr Sarah Flanagan, and Dr. Henrik Christesen to share experiences regarding Global Access to Hyperinsulinism Care to a full house. A recording of the presentation is available here. Visit our blog post to read more about the strides made at this exciting meeting.
At PES in Maryland, Kristen Rohli, PhD and Chief Research Officer Tai Pasquini, PhD, presented work by the CHI research team: “The Impact of Congenital Hyperinsulinism on Family Finances and Time: A Report from the HI Global Registry”. This was an excellent opportunity to connect with pediatric endocrinologists here in the US about the needs of people with HI.
At ADA in Chicago, IL, Kristen shared the CHI poster again on The Collaborative Research Network (CRN)’s CGM assessment tool from the CRN CGM workstream. This was CHI’s first time attending ADA, where we had the chance to share with diabetes experts the unique challenges of HI and post-pancreatectomy diabetes.
In late May, Julie Raskin and Tai Pasquini attended the Rare as One (RAO) Network Meeting hosted by the Chan Zuckerberg Initiative’s Science in Society program, held in Las Vegas, Nevada. The conference focused on advancing research partnerships, supporting organizational growth, and catalyzing scientific collaboration.
Julie Raskin was invited to present a “Story of Impact,” highlighting the transformative effect of RAO network support and grant funding on patient-centered congenital hyperinsulinism research. She presented key successes from the CHI Collaborative Research Network, including innovative collaborations with EndoCompass, A Research Roadmap for Better Hormone Health by the European Society of Endocrinology—and with LightCure, developing a targeted photodynamic therapy, that one day could be a promising treatment for congenital hyperinsulinism (HI).
Our community helped spread awareness on Hyperinsulinism Day, June 7th, through our Glucose as a Vital Sign campaign. All throughout the month of June, we shared our campaign participants’ first recorded glucose values, photos, and quotes to demonstrate the importance of checking and managing blood glucose in newborns. You can view a slideshow of their submissions and more about Hyperinsulinism Day on June 7th here.
To continue these awareness efforts, we have a short film “Turn Hours Into a Lifetime” in the works featuring three HI families – more information to come later this summer!
We have updated and created new HI resources on our website to expand on HI terminology, illustrate and simplify the Care Guidelines, and provide information to the newly diagnosed community! We now have a glossary page that defines useful HI terminology; this is a helpful tool to aid in understanding the many complex, scientific terms in the HI vocabulary.
The updated Understanding the Condition page provides an overview of HI, including information about how the disease works in the body as well as the treatment/management processes available and beyond.
The Newly Diagnosed page walks readers through the most important, digestible information while offering resources for support and community.
Our HI Care Guidelines Simplified provide a patient-friendly version of the International Guidelines for the Diagnosis and Management of Hyperinsulinism with illustrations and diagrams. These Simplified Guidelines were developed by the Collaborative Research Network (CRN), a group of 60+ HI physicians and advocates, to ensure accuracy and sensitivity.
CHI continues to contribute to vital HI research with two new publications this quarter! In April, ScienceDirect published “Global Disparities in Congenital Hyperinsulinism Care,” by CRN members Diva D. De Leon MD, MSCE, and Elizabeth Rosenfeld, MD, MSCE, and CHI staff members Lauren Lopez and Julie Raskin. This insightful piece highlights the various limitations in HI care access worldwide, identifies gaps in our understanding of these disparities, and calls for collaborative research efforts to address these issues and promote equitable care.
The following month, another article by the CHI Collaborative Research Network titled “Developing a congenital hyperinsulinism prioritized research agenda: a patient-driven international collaborative research network” was published in Frontiers in Endocrinology! This open access manuscript shares how the CHI Collaborative Research Network led by Congenital Hyperinsulinism International developed a roadmap that ranks research priorities that will lead to faster diagnoses, new treatments, and cures for congenital hyperinsulinism.
Team CHIbra rode again in Philadelphia for the annual Million Dollar Bike Ride. The ride was a wonderful success! Together, we raised just over $42,000 for HI research. We will be announcing more about the pilot research grant later this year. To view photos from the event, please visit our webpage.
The HI Global Registry – the only global hyperinsulinism patient registry – continues to be an essential resource on life with HI. With our Continuous Glucose Monitoring (CGM) integration, HI families have been able to seamlessly contribute information on glucose values for HI research.
HI advocate and HIGR Ambassador Meina shared her family’s HIstory in a recent blog post. Meina shared that she and her family “contribute to the HI Global Registry (HIGR) because we believe our experiences can help others. Each update we provide is a small but meaningful step toward better treatments, not only for [our daughter] Camilla but for children worldwide.” For more information about the HI Global Registry, please visit our Registry home page.
In case you missed it: An interview opportunity for our pancreatectomy study! If you or your child received a pancreatectomy to manage diffuse HI, you may qualify to take part in a non-treatment interview study with our research team. Even if you do not qualify, we encourage you to share the information with any HI families you may know who do! More information is available here.
Family-Centered Research on Quality of Life in Families with Congenital Hyperinsulinism: “Light for double specificity and efficacy without burden: LightCure.” The research team from the University of Applied Sciences in Hamburg, Germany, a part of the Lightcure Consortium, invites HI families to take part in a study which aims to develop a patient-reported outcome measure to assess health-related quality of life in patients with HI and their caregivers, as well as shared decision-making materials. If you are interested, please email Dr. Stefanie Witt (stefanie.witt@haw-hamburg.de). More information is available here.
You or someone you love could be part of developing new therapies for congenital hyperinsulinism. The ACHIEVE clinical trial is seeking children and adults with congenital hyperinsulinism for participation. The study is evaluating a long-acting investigational drug that acts like glucagon in the body to maintain blood sugar levels. Dosing is only required once per week. During the study qualified participants will be provided with a continuous glucose monitoring system, glucometer, and patient diary. Visit the Hanmi page for more information.
Thank you for catching up on all the exciting work we’ve accomplished this past quarter! Now, let’s dive into what’s on the horizon for the upcoming months…
Our next Family Conference will be in Philadelphia, PA, on October 3-5 at the Children’s Hospital of Philadelphia (CHOP)! Our family conferences are an excellent opportunity to connect with the HI community, and are open to HI families, physicians, and anyone who would like to learn more about the condition. The CHI staff, the CHOP Congenital Hyperinsulinism Center team, additional world-renowned physicians, researchers, HI specialists, HI family members, and CHI advocacy leaders will be presenting at the conference. There will also be interactive sessions where HI families can share their stories and experiences. More information on the conference topics, hotel, registration, and scholarships can be found here.
Save the date! The sweetest night of the year, our annual Sugar Soirée, will be held on the evening of Saturday, November 15th at The Highlawn, a historic venue with spectacular New York City skyline views in West Orange, New Jersey. The Sugar Soirée is a joyful celebration of the CHI community—bringing together individuals, families, and leaders from across industries to raise critical funds for congenital hyperinsulinism research and support. It’s an inspiring night of connection, purpose, and hope. We hope you can join us!
Thank you for joining us in reflecting on this monumental past quarter. We’ve made incredible progress, and it’s all thanks to your unwavering support! We hope you’ll consider making a small donation to help fund our programs dedicated to improving the lives of people with hyperinsulinism through research, support, and advocacy.
