Congenital Hyperinsulinism International
Congenital Hyperinsulinism International
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About this organization
Mission
Congenital Hyperinsulinism International (CHI) is the leading patient organization dedicated to improving the lives of people with hyperinsulinism (HI). HI is a life-threatening disorder that causes dangerously low blood sugar levels due to the over-production of insulin.
About
CHI supports research and development to better understand, treat, manage and hopefully cure HI. CHI shares the patient perspective with researchers, members of the biopharmaceutical industry to encourage the development of patient-centered treatments. CHI is part of the Million Dollar Bike Ride grant program with the University of Pennsylvania's Center for Orphan Diseases; a pilot research grant is offered each year for an innovative, preclinical or clinical study with the potential to lead to a better HI treatment, a cure for HI, or improvement in the quality of life for those affected by HI.CHI has developed the HI Global Registry which provides a convenient online platform for the HI patient community to share their experiences of living with HI. By participating in the HI Global Registry, the patient community will help themselves and researchers better understand HI to advance better treatments, a potential cure, and more timely and accurate diagnoses.CHI worked on the development of a hyperinsulinism hyperammonemia (HIHA) pilot grant for an innovative, preclinical or clinical study that has the potential to lead to a better HIHA treatment, a cure for RIHA, or improved quality of life to those affected by HIHA. Patients with HIHA secrete too much insulin causing hypoglycemia and they have high ammonia levels in their blood. They are at risk for brain damage or death due to prolonged hypoglycemia and frequently have epilepsy and learning disabilities thought to be caused by high ammonia levels.
Interesting data from their 2019 990 filing
The non-profit's mission is outlined in the filing as being “Congenital hyperinsulinism international (chi) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism. chi provides education, information and support to families of diagnosed children and adults living with the condition. chi works to promote knowledge and awareness of the disorder as it leads to timely diagnosis and decreases death and brain damage, better care and better neurological outcomes. chi supports research and development for a better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.”.
When outlining its responsibilities, they were referred to as: “Congenital hyperinsulinism international (chi) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism. chi provides education, information and support to families of diagnosed children and adults living with the condition. chi works to promote knowledge and awareness of the disorder as it leads to timely diagnosis and decreases death and brain damage, better care and better neurological outcomes. chi supports research and development for a better understanding of the condition, leading to a better quality of life, better treatments and management of the condition, and ultimately, a cure.”.
- The state in which the non-profit operates has been officially reported as NM.
- As per the non-profit's form for 2019, they have 3 employees on their payroll.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $100,000 and $250,000.
- Revenue is between $250,000 and $500,000.
- Revenue less expenses is $191,097.
- The CEO compensation scheme within the organization is not based on a review and endorsement by an impartial party.
- The organization has 9 independent voting members.
- The organization was formed in 2006.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $131,232 in salary, compensation, and benefits to its employees.
- The organization pays $18,863 in fundraising expenses.
- The organization has minutes of its meetings.
- The organization has fundraising events.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.