We are so grateful for your continued support, and we are excited to share with you a little bit about what Congenital Hyperinsulinism International (CHI) has been up to over the past few months. Continue reading to learn more about our programs, partnerships, and a few upcoming events!
Our Chief Research Officer Tai Pasquini, PhD Presents on Hyperinsulinism Research!
In May, CHI Chief Research Officer Tai Pasquini, PhD attended the World Orphan Drug Congress to present a poster on the work of the Collaborative Research Network (CRN). This was an excellent opportunity to bring attention to the need for hyperinsulinism research by highlighting the CRN; the World Orphan Drug Congress is an important meeting bringing together rare disease advocacy organizations, biotechs, and pharmaceutical industry members to discuss the creation of rare disease drugs that often face funding challenges.
The CHI Collaborative Research Network (CRN) is a dynamic international collaboration of researchers, clinicians, and expert patient and caregiver advocates working together to accelerate hyperinsulinism research. To learn more about the work of the CRN, visit the CRN page.
HI Kids Corner
“If your sugar is low, and your insulin is high, and you don’t know why, it might be HI!” Have you heard this catchy, educational tune for kids to sing along to? We have links to our sing-along videos about managing life with HI along with informative coloring materials explaining how HI works, available at our HI Kids Corner webpage! These are great not only for HI kids, but to help teach their siblings, friends, cousins, and classmates about life with HI!
We are hiring! Join the CHI family
CHI has a small, dynamic, and dedicated staff that accelerates research towards better treatments and a cure, advocates for timely diagnosis and improved standards of care, and supports families and people living with HI around the world.
We are seeking two integral team members to join our staff. Please find the job descriptions for the Development Manager and the Research Manager.
If you are interested in either of these positions, please email a cover letter and resume to jobs@congenitalhi.org by May 29, 2024.
The HI Global Registry: Highlighting the Patient Experience in Research
The HI Global Registry (HIGR) – the only global, patient-powered hyperinsulinism database – has seen some amazing achievements during this quarter! In April, we launched all HIGR surveys in six new languages. You can now choose to complete surveys in English, Spanish, German, Portuguese, Italian, French, or Korean This is a huge step in expanding the HI family voice in research to include more members of our global community!
You can learn more about HIGR and how you can participate here. If you would like assistance joining the registry, we have video and PDF guides available here, or you can email us at info@higlobalregistry.org
Coming up soon: our next CHI Family Conference!
Can you 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! Register no later than May 23. You can see the full list of speakers, topics, and registration/hotel info on our website.
Support Team CHIbra at the 2024 Million Dollar Bike Ride!
CHI and Team CHIbra will be raising money for HI research at the Million Dollar Bike Ride (MDBR) in Philadelphia, PA on Saturday, June 8, 2024! Thanks to your support, we have raised over $743,000 dollars to fund HI research over the past 10 years. The MDBR will match the first $30,000 we raise, making your donations go even further! If you can join Team CHIbra on the ride in Philly visit here and look for Raring to go for Team CHIbra!
If you cannot join us in person, but would like to fundraise or ride virtually, please visit our virtual fundraising page.
Save the date: The 11th Annual Sugar Soirée!
Our 2024 Sugar Soiree will be held September 28 at the Montclair Art Museum, to gather with the CHI community and celebrate and raise funds to improve the lives of children and adults born with congenital hyperinsulinism and their families. Funds raised at the Sugar Soirée will continue to support the work of CHI:
- Raising vital awareness of HI to end preventable brain damage and death from hypoglycemia (low blood sugar).
- Funding HI research for better treatments and a cure.
- Helping patients gain access to specialized treatment, medications, and supplies.
- Supporting those living with the disease and their families every step of the way.
You can read more about the event, including ticket and hotel information on our Sugar Soirée page.
Save the date: Fall 2024 Family Conference in Liverpool!
CHI is excited to announce that our second Congenital Hyperinsulinism Family Conference of 2024 will be held in Liverpool, United Kingdom on November 14th-16th! This conference will be held in partnership with our friends at Children’s Hyperinsulinism Charity, an amazing HI advocacy group in the UK! More details will be coming soon – we hope to see you there!
Stay tuned for upcoming announcements about future CHI events!
We hope you enjoyed reading through our quarterly newsletter! We appreciate your continued 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.
You can find more of our recent newsletters below:
2023 CHI HI-lights – Our Year in Review
