Our autumn quarterly newsletter, HI-lights, has landed in your inbox! We are so grateful for your continued support. HI-lights includes news from Congenital Hyperinsulinism International (CHI) with updates on our programs, partnerships, links to research studies, articles, videos and podcasts, and upcoming events!
Daphne’s HI-Story
The Fuentes-Solitario family traveled from Cebu City, Philippines, to Philadelphia, PA, to receive treatment at the Children’s Hospital of Philadelphia (CHOP) in late 2023. Mom Faithelen describes the initial challenges in understanding Daphne’s hyperinsulinism and Beckwith-Wiedemann Syndrome diagnoses, as well as the ways in which the HI community came together virtually to help through CHI’s Family Support Forum on Facebook. Visit our HI-Story page to watch Daphne’s HI-Story and to view our full collection of interviews.
Welcoming a new member to Team CHI!
In August, we welcomed our newest member to the team: Research Manager Kristen Rohli! Kristen received her dual degrees in biochemistry and psychology from Louisiana State University and went on to earn her PhD in genetics from the University of Iowa, where she gained valuable knowledge of pancreatic islet biology and regulation of insulin secretion.
We are thrilled to welcome Kristen! You can read more about Kristen in her blog post.
Another Successful Sugar Soirée!
The 2024 Sugar Soirée was a massive success! The evening was a heartfelt celebration of the hyperinsulinism community and a reflection on another successful and impactful year. In total, we raised nearly $200,000, which will help us continue to advance research, provide essential support to patients and families, and raise awareness for congenital hyperinsulinism.
Visit our Sugar Soirée page to view our photos from the evening, watch speaker and the Be My Sugar awardee videos and read about our wonderful host, Cheri Preston.
Representing CHI at the NORD Summit!
CHI CEO Julie Raskin attended the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington DC last week. The focus of this year’s Summit was “Equitable Access to Innovation.” This proved to be an excellent opportunity for Julie to share a scientific poster on our partnership with the University of Exeter – The Open Hyperinsulinism Genes Project. Through this initiative, we provide free genetic testing internationally.
Many people at the Summit were excited to learn that our program enables both access to genetic testing, which greatly benefits the individual patients who participate, and inclusion in genetic research. You can read more about the event in Julie’s recent blog post!
Clinical Research
One of CHI’s important roles is to inform the patient community of clinical research opportunities in order to help raise awareness of and increase participation in clinical research and clinical trials; research is necessary to accelerate the development of new drugs and treatments for patients. Current clinical research trials include:
- Hanmi: HM15136 Treatment for 8 Weeks in Subjects Aged ≥2 Years With Congenital Hyperinsulinism (CHI). For more information on this trial, visit: Achieve Study.
- Rezolute: RZ358 in Patients With Congenital Hyperinsulinism. For more information on this trial, visit: Citeline Connect: sunRIZE RZ358
- Children’s Hospital of Philadelphia (CHOP) has a Research Study for Individuals with Hyperinsulinism, Type 1 Diabetes Mellitus, and Healthy Children.
Visit our website for more information about clinical trials.
Can personal stories drive change in newborn screening practices?
CHI CEO Julie Raskin was invited by the Story Collider, a podcast with a mission to reveal the vibrant role that science plays in all of our lives through the art of personal storytelling, to share her son’s birth story – one of the most personal and consequential stories of her life.
Listen to Julie’s inspiring story on the Story Collider page or wherever you listen to your podcasts. You can also visit our recent blog post to read about Julie’s experience on the podcast.
The HI Global Registry (HIGR) turns six years old!
Join us to celebrate HIGR’s 6th birthday! This year, HIGR has expanded to provide all surveys in SIX new languages – French, German, Italian, Korean, Portuguese, and Spanish, with Dutch on the way!
The HI Global Registry (HIGR) is the only international, patient-powered registry for people with hyperinsulinism. Individuals who have been affected by HI or their parents may participate in this project, which is an important resource for current and future research studies that may lead to improved care for people with HI. You can learn more at www.higlobalregistry.org
The Collaborative Research Network (CRN)
The CHI CRN includes an international group of HI experts and patient advocates working together to try and solve the most important research questions that will lead to the best outcomes for people living with HI.
Throughout the year, the CHI CRN has been meeting in workgroups virtually to tackle key items as identified in the prioritized research agenda.
- Newborn Screening (Diagnose all babies with congenital hyperinsulinism in a timely manner)
- Glucose as a Vital Sign (Increase awareness and timely diagnosis of HI)
- Care Guidelines (Create and disseminate continually evolving global care guidelines)
- Natural History (Build a robust registry that collects patient-reported, physician, and real-world data to provide a foundation for HI natural history)
- Continuous Glucose Monitoring (Create principles for Draft guidelines on CGM use in HI patients)
At the end of August, we had an all-CRN Member Virtual Meeting to update everyone on the work that had been done in each group.
Register Today: Fall 2024 Family Conference in Liverpool!
CHI is excited to share with you that our second Congenital Hyperinsulinism Family Conference of 2024 will be held in Liverpool, United Kingdom on November 14th-16th! CHI is organizing this conference with our friends at Children’s Hyperinsulinism Charity!
You can register and read more information on our Liverpool Family Conference page – we hope to see you there!
For those unable to make the trip to Liverpool, a small part of the conference will be available to watch via live stream. Registration is available here!
Stay tuned for upcoming announcements about future CHI events!
We hope you enjoyed reading our quarterly newsletter! Thank you for joining our mission to improve the lives of those with hyperinsulinism. Whether we’re raising awareness, highlighting the patient experience, or advocating for better treatments, your support makes all the difference. If you would like to help us continue to fund our programs, please consider clicking the button below.
