Story
"Every blood sugar check was like taking my breath away. It was like you were living in 3-hour increments." - HI Parent Karissa
"It took a year to get a diagnosis...It took another year of trial and error to find a treatment plan that worked." - HI Parent Rebecca
"We did blood sugar checks, and G-tube feeds every 2-3 hours around the clock." - HI Parent Marbella
We know how hard it is to live with and manage congenital hyperinsulinism (HI). That is why Team CHIbra is raising funds to address the critical need for research for diagnostic tests that would increase timely diagnosis of HI, tools for better management, new treatments, and one day, a cure.
HI is a life-threatening disorder that causes dangerously low blood sugar levels. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. The consequences of HI are preventable; however, HI is often overlooked, misdiagnosed, or even when detected, mistreated.
We hope you can join Team CHIbra in raising HI research funds this year! We are raising these funds as part of the Million Dollar Bike Ride initiative, a project of the Orphan Disease Center of the University of Pennsylvania, our partner in funding research - who will be matching the first $30,000 of our donations! Learn more here: https://www.milliondollarbikeride.org/
Our fundraising timeline is short to reach our goal of raising $40,000 by June 30, 2022. Every donation counts - big and small!
Thanks to all of you, Congenital Hyperinsulinism International (CHI) has raised over $600,000 for congenital hyperinsulinism research over the past 8 years. Let's keep funding research for a brighter future!
How can you support Team CHIbra this year? You can:
* Share this page with friends and family via email and social media to ask for their support to raise research funds and awareness. Donate $5, $10, $25, or any amount - every gift matters.
* OR click the orange "Start Fundraising" button to the upper right, of this page, and you'll be on your way to creating your own 2022 Team CHIbra fundraising page that you can share with friends and family. Maximize your fundraising impact and personalize your fundraiser with your stories, photos, and videos. You can manage your fundraiser on your personal fundraising page from start to finish.
* Join us as a rider or volunteer in Philadelphia, PA on June 11, 2022! You can register here: https://www.milliondollarbikeride.org/registration#
Join Team CHIBra and get going today! All fundraising must be completed by Friday, June 30, 2022.
Need a hand? Call Jennifer Schmitt, Associate Director, CHI, at 973-544-8372 or email jschmitt@congenitalhi.org.
Past fundraising efforts have resulted in the following research grants (graphics in the photo gallery at the top of this page):
*2021 Grant Recipient: Dr. Elizabeth Rosenfeld, Children's Hospital of Philadelphia, for Natural History of the Hyperinsulinism Hyperammonemia Syndrome A Multi-center observational study incorporating patient-centered data through the Hyperinsulinism Global Registry (HIGR)
*2020 Grant Recipient: Dr. Indraneel Banerjee, University of Manchester, Royal Manchester Children's Hospital, for maximizing the utilization of the Hyperinsulinism Global Registry (HIGR)
*2019 Grant Recipient: Thomas Smith, PhD, University of Texas, Medical Branch, for new therapeutic treatments for the hyperinsulinism/hyperammonemia syndrome (HI/HA)
*2018 Grant Recipient: Dr. Amanda Ackermann, Children's Hospital of Philadelphia, for Vitamin E supplementation in hyperinsulinism/hyperammonemia syndrome.
*2017 Grant Recipient: Dr. Diva De León-Crutchlow, Children's Hospital of Philadelphia and the University of Pennsylvania, for a pilot study of the bihormonal bionic pancreas for the treatment of diabetes post-pancreatectomy in children with congenital hyperinsulinism.
*2016 Grant Recipient: Dr. Changhong Li, Children's Hospital of Philadelphia, for drug development for a treatment for glutamate dehydrogenase hyperinsulinism.
*2015 Grant Recipient: Mark Dunne, BSc, PhD, of the University of Manchester, for research towards precision medicine in the treatment of congenital hyperinsulinism in infancy.
*2014 Grant Recipient: Dr. Diva De León-Crutchlow, Children's Hospital of Philadelphia, for a pilot study of the efficacy and safety of sirolimus in the treatment of congenital hyperinsulinism.