Congenital Hyperinsulinism International

🌟 September is Newborn Screening Awareness Month! 🌟 Early detection is crucial for preventing long-term damage from hypoglycemia. Unfortunately, congenital hyperinsulinism (HI) isn’t included in the 60+ conditions tested in newborn screenings. At CHI, we’re advocating for increased research and awareness to recognize “Glucose as a Vital Sign” and ensure HI is detected as early as possible. Swipe through our post to learn more about how newborn screening impacts congenital hyperinsulinism. 💙 #NewbornScreening #NewbornScreeningAwarenessMonth #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

🌟 Special Guest Speaker Announcement! 🌟 CHI is thrilled to welcome Jilani Huffman as our special guest speaker for the Sugar Soirée! 🎉 At just ten years old, Jilani took to the stage at our 2023 Family Conference with Children’s Hospital of Philadelphia (CHOP) to share her inspiring journey of managing HI and post-pancreatectomy diabetes. Her profound understanding of how HI affects her life, along with her active role in her medical care, has empowered her to achieve what once seemed impossible without supervision. Now, she bikes to school, spends time with friends, and attends in-person classes independently. 🚴♀️👫📚 Always radiating positivity, Jilani encourages us to practice gratitude and look forward to the future. We are honored to share her invaluable perspective with our Sugar Soirée guests. 💙 Join us for an unforgettable evening! ✨️ The Sugar Soirée will be held at the Montclair Art Museum in Montclair, New Jersey, on the evening of Saturday, September 28th, 2024. To read more about the Sugar Soirée - including a description of the event, awardees, hotel information, and to purchase tickets – visit https://lnkd.in/e8tG3kpE #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

💙 Did you know that September is NICU Awareness Month? At CHI, we are deeply grateful to NICU staff worldwide for the incredible service they provide to newborn infants and parents. 💙 Help us raise awareness of hyperinsulinism and neonatal hypoglycemia – post an NICU photo and share your experiences using the hashtag #NICUAwarenessMonth! #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

📣 Registration for our 2024 Family Conference in Liverpool, UK is now available! 💙 The conference is being organized by Congenital Hyperinsulinism International (CHI) with The Children's Hyperinsulinism Charity UK (CHC) at the Hilton Liverpool City Center in Liverpool, UK. 🗓️ The conference will take place Thursday, November 14th through Saturday, November 16th. 🔗 Additional information including our confirmed speakers and registration, hotel, and scholarship details are available here: https://lnkd.in/e7bQNiTP #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

📣 Exciting news! The 2024 Million Dollar Bike Ride Pilot Research Grant is now open! This year, CHI is offering TWO research grants of $77,165 each on hyperinsulinism and hyperinsulinism-hyperammonemia syndrome respectively ‼️ 🗓️ Letters of Interest will be due Friday, September 20th at 8:00 pm EST via Submittable 📊 Applicants are encouraged to contact CHI to explore how to utilize the HI Global Registry. Please contact research@congenitalhi.org if you would like to discuss your proposed project. 🚲️ Thank you to all our Team CHIbra riders, walkers, volunteers, and donors who made these grants possible! 🔗 Visit http://bit.ly/MDBR2024RFA to learn more and apply! #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

Our 2024 Sugar Soirée Silent Auction is already off to a great start! Do you have something you can donate to be included with Giants tickets, a week in France, and a gift certificate for custom printing at Mixtiles? ✨️ CHI is seeking donations for our 2024 Sugar Soirée auction! Please email jschmitt@congenitalhi.org if you are interested in donating or have any questions. We appreciate your support! ✨️ The Sugar Soirée will be held at the Montclair Art Museum in Montclair, New Jersey, on the evening of Saturday, September 28th, 2024. To read more about the Sugar Soirée - including a description of the event, awardees, hotel information, and to purchase tickets – visit https://lnkd.in/e8tG3kpE #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

✨️ CHI is excited to announce that the Sugar Soirée Be My Sugar Sweetest Supporter Award will go to Sally Bliumis-Dunn! ✨️ Sally has been an ardent supporter of CHI the very beginning; she led a poetry workshop at the first CHI Family Conference in Philadelphia in 2003, and produced the first CHI video. Sally has supported and attended all ten prior Sugar Soirées. In her professional life, Sally is a prize-winning poet who is a feature writer for Plume Magazine and has written four poetry books. ✨️ The Sugar Soirée will be held at the Montclair Art Museum in Montclair, New Jersey, on the evening of Saturday, September 28th, 2024. To read more about the Sugar Soirée - including a description of the event, awardees, hotel information, and to purchase tickets – visit https://lnkd.in/e8tG3kpE #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

✨️ CHI is excited to announce that the Sugar Soirée Be My Sugar Extraordinary Nurse award will go to Clare Gilbert! ✨️ Clare is a Clinical Nurse Specialist in hypoglycemia and HI within the endocrinology team at Great Ormond Street Hospital (GOSH) in London, one of six CHI Centers of Excellence in the world. Clare is a key member of the CHI Collaborative Research Network and has made important contributions to a variety of its research and advocacy projects. ✨️ The Sugar Soirée will be held at the Montclair Art Museum in Montclair, New Jersey, on the evening of Saturday, September 28th, 2024. To read more about the Sugar Soirée - including a description of the event, awardees, hotel information, and to purchase tickets – visit https://lnkd.in/e8tG3kpE #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

✨️ Our Sugar Soirée hotel room blocks will close August 27th! ✨️ A room block has been set aside for our Sugar Soirée guests at the special rate of $359.00 per night at the MC Hotel, 690 Bloomfield Ave in Montclair, located within walking distance of the Montclair Art Museum. Book your group rate for Congenital HI Sugar Soiree Room Block for the MC Hotel before Tuesday, August 27, 2024 - https://lnkd.in/dadz77CC ✨️ Accommodations will also be available at the Cambria Hotel West Orange at the special rate of $149.00 per night, located a few miles from the venue at 12 Rooney Circle, West Orange, NJ, 07052, US. Book your group rate at the Cambria Hotel before Tuesday, August 27, 2024 - https://lnkd.in/di8TE3zr #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

📣 Exciting news! The 2024 Million Dollar Bike Ride Pilot Research Grant is now open! This year, CHI is offering TWO research grants of $77,165 each on hyperinsulinism and hyperinsulinism-hyperammonemia syndrome respectively ‼️ 🗓️ Letters of Interest will be due Friday, September 20th at 8:00 pm EST via Submittable 📊 Applicants are encouraged to contact CHI to explore how to utilize the HI Global Registry. Please contact research@congenitalhi.org if you would like to discuss your proposed project. 🚲️ Thank you to all our Team CHIbra riders, walkers, volunteers, and donors who made these grants possible! 🔗 Visit http://bit.ly/MDBR2024RFA to learn more and apply! #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia