Congenital Hyperinsulinism (HI) is a disease causing dangerously low blood sugar levels (hypoglycemia) due to the overproduction of insulin. Every year HI babies suffer permanent brain damage or death due to the effects of low blood sugars. HI’s consequences are preventable; tragically, HI is often overlooked, misdiagnosed, or even when detected, mistreated. Families with HI babies need on-going support as treatment is complicated, constant, and prolonged – many patients will battle hypoglycemia their entire lives.
Congenital Hyperinsulinism International (CHI) is the leading 501 c(3) nonprofit dedicated to improving the lives of people living with HI all over the world. CHI supports research for better treatments and a cure, raises awareness of HI and advocates for early HI detection and improved care, and supports those with HI and their families.
We invite you, wherever you are in the world, to create your own "Raring To Go For CHI" Fundraising Team to support the work of CHI. Whether it be on a bicycle, by water, or your own two feet, we know you’re "Raring to Go for CHI!" Individual donations are also an option!
As part of its focus on research, CHI is also raising funds for the HI Global Registry. In conjunction with HI groups around the world, using the NORD patient registry platform, CHI is establishing a method to collect the long-term, natural history information of individuals with HI, known as the HI Global Registry. The primary objectives of the HI Global Registry are to:
● Provide a convenient online platform for participants (or caregivers) to self-reportcases of congenital hyperinsulinism (HI) in order to document the natural historyand outcomes of individuals with HI.
● To improve knowledge of global prevalence of HI and any associated co-morbidities.
● To better understand the role of timely diagnosis of HI on patient developmental outcomes.
● To better understand patient health outcomes of different HI treatment options, settings and provider types.
● To identify both positive and negative effects related to different HI treatment options.
● To support the evolving standards of care for HI patients using natural history and outcome information from a global perspective. With global HI natural history information collected, CHI hopes to usher in a new era of HI research studies leading to better treatments and a cure!
The HI Global Registry will also be a fantastic resource for HI families. There are two ways you can participate and/or help:
1. DONATE as an individual to an existing team 2. CREATE your own remote team INSTRUCTIONS TO CREATE YOUR TEAM:
Select "CREATE Your Remote Team"
Click "Start Your Own Fundraiser" if you are creating a new team (or "Join a Team" if yours already exists)
Name your team "Raring To Go for CHI - TEAM ______" (name of person with HI you are Raring To Go for)
Describe your "Raring To Go for CHI" Ride and why you're riding/running/what have you
Upload a photo with the "Raring To Go for CHI" Logo (we will provide - send your photos to firstname.lastname@example.org)
When it prompts you to "Select Charity," enter "CONGENITAL HYPERINSULINISM INTERNATIONAL, Cedar Crest NM, EIN: 203068945"
And that's it! You should be ready and "Raring To Go!"
Email email@example.com if you have any further questions about setting up your fundraising team!