We are so grateful for your continued support, and we are excited to share with you what Congenital Hyperinsulinism International (CHI) has been up to. Continue reading to learn more about our programs, partnerships, and upcoming events to help improve the lives of people with hyperinsulinism!
Letter to the American Academy of Pediatrics
In February, CHI’s Collaborative Research Network (CRN) wrote a letter to the American Academy of Pediatrics (AAP), urging them to adopt stronger hypoglycemia guidelines to ensure successful screening and treatment of hypoglycemia to prevent brain damage. This letter was submitted at a particularly timely moment when the AAP was in the process of updating and finalizing the US national guidelines for detecting neonatal hypoglycemia. The CRN wrote that they “strongly believe that the current guidelines do not adequately identify and manage all affected individuals.” To learn more about the work of the CRN, visit the CRN page.
2023 Million Dollar Bike Ride Grant Winner
In January, the 2023 Million Dollar Bike Ride grant awardees were announced by Penn Medicine Orphan Disease Center. Michael Kalwat, PhD, of Indiana Biosciences Research Institute received Team CHIbra’s pilot research grant of $70,200 for “Congenital hyperinsulinism models for novel drug discovery.” You can see all of the past CHI MDBR Grant winners on our website here.
ESPE Connect
On Valentine’s Day, our founder and CEO Julie Raskin joined CHI Collaborative Research Network (CRN) members Senthil Senniappan and Klaus Mohnike at the ESPE Connect webinar: New Perspectives in Congenital Hyperinsulinism. Topics included diagnosis and management presented by Dr. Senniappan, and new advances of HI presented by Professor Klaus Mohnike. In this webinar, Julie highlighted the parent and family perspectives of HI, and offered insightful answers to questions on medical access challenges. As part of ESPE’s webinar series, this event reached a new record for number of registrations! Thank you to everyone who took the time out of your day to hear these passionate leaders in HI share the latest information.
Rare Disease Day 2024
On February 29th (the rarest day of the year!), CHI celebrated Rare Disease Day with our hyperinsulinism community over Zoom. Rare Disease Day is a day that celebrates and amplifies the voices of those living with rare diseases and people who advocate for them. In honor of this special day, we shared the dreams of our hyperinsulinism friends – you can view a slideshow of their dreams here! Our community’s dreams truly inspire the action of doctors, researchers, and advocates to fight for a better life for those with hyperinsulinism. Thank you to everyone who contributed, and it was lovely to gather on Zoom!
HI-Story Corner
Jonah Shusterman, a teenager from the USA with hyperinsulinism (HI), sat down recently with CHI CEO Julie Raskin to share his story growing up with HI. Jonah told us all about his challenges navigating adolescence with hyperinsulinism and shared his joys and triumphs – including grilling and scuba diving! You can watch this interview on our YouTube channel.
HI-Stories help connect our hyperinsulinism community with their shared experiences while celebrating our unique accomplishments despite this disease. Are you interested in sharing your/your family’s HI-Story? Visit this link to sign up or contact us via email at Lbarnett@congenitalhi.org
COE Application Open
We are thrilled to announce that applications for the CHI Center of Excellence (COE) program are now being accepted! This is an opportunity to become part of a distinguished network of centers dedicated to delivering unparalleled care for individuals living with HI. This honor recognizes expert centers that provide the highest level of multi-disciplinary care to HI families and an on-going commitment to research and collaboration. The application deadline is April 15, 2024. Details and application criteria are available on our webpage.
The HI Global Registry
The HI Global Registry (HIGR) – the only global, patient-powered hyperinsulinism database – has reached some incredible milestones during this quarter! In January, our 2023 Annual Report was released, providing insightful data to help inform hyperinsulinism research and care. Our report contains data on the lived experience of HI families, including feeding issues, medication side effects, and so much more! If you are interested in reading the report, you can visit this link.
We now have two video tutorials, as well as downloadable PDFs, demonstrating how to join our new and improved HIGR platform! You can find it all here!
Upcoming Events
Our next CHI Family Conference
Join us in Fort Worth, Texas at Cook Children’s Medical Center on May 31 – June 2 for our first family conference of 2024! The CHI staff, the Cook Children’s team, additional world-renowned physicians, researchers, congenital hyperinsulinism (HI) specialists, HI family members, and CHI advocacy leaders will present on various topics related to HI, in addition to interactive sessions where HI families can share their stories and experiences. We have a great weekend in store for everyone! You can see the full list of speakers, topics, and registration info on our website.
CHI is arranging for a room block at the Hilton Garden Inn Fort Worth Medical Center for Friday, May 31 and Saturday, June 1 during the conference – there are limited hotel scholarships for HI families available. You can apply for a scholarship here.
Support Team CHIbra at the 2024 Million Dollar Bike Ride!
CHI will once again be participating in the Orphan Disease Center Million Dollar Bike Ride in Philadelphia, Pennsylvania on June 8, 2024! Thanks to your support, we have raised over $70,000 dollars to fund hyperinsulinism research. If you are interested in joining team CHIbra on the ride this year, please register here and look for Raring to go for Team CHIbra!
If you cannot join us in person, but would like to fundraise, please email jschmitt@congenitalhi.org
Stay tuned for upcoming announcements about future CHI events!
Thank you for reading through our quarterly newsletter! We so appreciate your support of our efforts to improve the lives of individuals with hyperinsulinism – whether we are spreading awareness, highlighting the patient experience, or fighting for improved treatments. If you would like to help us continue to fund our programs, please consider clicking the button below.
