2023-11-10T14:07:16-08:00 2022-12-31 272133606 MAUREEN A LEIDL CPA 223 LORRAINE AVE MONTCLAIR NJ 07043 990 2022-01-01 203068945 CONGENITAL HYPERINSULINISM INTERNATIONAL CONG 9735660334 PO BOX 135 GLEN RIDGE NJ 07028 MASON SMITH Treasurer 2023-11-08 true MASON SMITH 999009999 true Maureen A Leidl CPA P00847064 9737832000 X 2 AAL1 IAL1 FAL1 2022 2023-04-26 12:10:37Z PO BOX 135 GLEN RIDGE NJ 07028 1316229 false X www.congenitalhi.org X 2006 NM Congenital Hyperinsulinism International's mission is to improve the lives of people with congenital hyperinsulinism,a life-threatening genetic disorder that causes severe hypoglycemia that can lead to seizures,brain damage,or death, if untreated. 6 6 5 130 0 528509 477854 359850 812623 0 80 -27852 888439 1262625 87278 87931 0 343321 395761 0 94972 111229 350363 541828 834055 346611 428570 1177701 1644315 8582 46626 1169119 1597689 Congenital Hyperinsulinism International (CHI) is dedicated to improving the lives of babies, children, and adults affected by congenital hyperinsulinism (HI). 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. false false 270047 CHI supports research and development to better understand, treat, manage and hopefully cure HI. CHI shares the patient perspective with researchers and members of the biopharmaceutical industry to accelerate 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 also administers a one-time hyperinsulinism hyperammonemia(HIHA) pilot grant for an innovative, preclinical study that has the potential to lead to a better HIHA treatment, a cure for HIHA, or improved quality of life to those affected by HIHA.CHI conducts the HI Global Registry (HIGR) research project. HIGR provides a convenient online platform for the HI patient community to share their experiences of living with HI. HIGR data is stored on the secure cloud-bassd IAMRARE platform and hosted by the National Organization for Rare Disorders (NORD). By participating in HIGR, the patient community helps themselves and researchers better understand HI to advance better treatments, a potential cure, and more timely and accurate diagnoses. A new substudy, MAXHIGR, was introduced in 2022 that allows physician reported data to be added to the registry.In 2022, CHI continued developing the Collaborative Research Network, after receiving a Rare As One Grant from the Chan Zuckerberg Initiative to create a prioritized research agenda for the development of faster and more accurate diagnoses, new evidence-based treatments and cures, standardized clinical guidelines, and increased and improved access to treatment, medication, devices, and supplies. This ambitious project includes seven working groups focused on different aspects of the agenda, comprised of 57 leading researchers, clinicians, and patient advocates from 16 countries. In 2021, CHI continued to support the CHI Centers of Excellence Designation. Six centers were granted the designation and recognized as multi-disciplinary clincical and research centers in the field of congenital hyperinsulinism in 2021. The goals of this program are to make it easier for patient families to access care at leading hospitals, encourage patient-focused standards at the leading hospitals, foster a pipeline of expert clinicians and researchers, and to encourage collaboration among researchers, clinicians, and patient leaders and advocates.In 2022, the CHI staff and members of the Board of Trustees were authors of three peer-reviewed publications which meant that the patient voice was included in medical literature for the first time. Global Registries in Congenital Hyperinsulinism, Congenital Hyperinsulinism International: A Community Focused on Improving the Lives of People Living With Congenital Hyperinsulinism, and Congenital hyperinsulinism in infancy and childhood: challenges, unmet needs and the perspective of patients and families were all published in 2022. 246407 CHI advocates on behalf of HI families all over the world for access to quality treatment, medication, and supplies. CHI provides opportunities for affected families to emotionally support each other because the home care medical management of HI is often complicated and difficult. CHI offers online forums, and CHI staff and volunteers are available by telephone, online and in-person for support. CHI establishes funds at hospitals to support families from out of town who must travel to centers of excellence for patient care. CHI covers the cost of genetic testing for HI for any patient suspected of having the disease who otherwise cannot afford genetic testing. The testing is conducted by a leading genetics lab at the University of Exeter in the UK. 187508 CHI increases awareness of HI in order to improve timely diagnosis among the public and medical personnel who have a direct opportunity to detect it, to decrease adverse neurological outcomes and death. To that end, CHI spreads awareness of HI with ongoing campaigns on social media, the CHI website and blog, CHI posters in 24 languages, CHI brochures, through direct mail and email, and at meetings and conferences. CHI provides educational resources and holds onferences and meetings on HI for patients, families, medical professionals, school personnel,and rare disease industry members. To date, CHI has held 31 family and research meetings and conferences with presentations from academic researchers, members of advocacy organizations, HI patients and families, and biotechnology companies. 703962 true true false false false false false false false false false false false false false false true false false false false true false false true false false true false false false false false false false false false false false false false false false false false false false true 6 0 true 5 true false false false false true true false false 0 false false false false false false false X 6 6 false false false false false false false true true false false true true true true false false true true false CA CO CT FL IL MA MD NJ NM NY PA VA X X X X JENNIFER SCHMITT 9735448372 PO BOX 135 GLEN RIDGE NJ 07028 JULIE RASKIN Executive Dir. 40.00 0.00 X X 93866 0 0 SHEILA BOSE President 6.00 0.00 X X 0 0 0 TURAYA BRYANT KAMAU Secretary 1.00 0.00 X X 0 0 0 ERIN GREAVES Director 1.00 0.00 X 0 0 0 MASON SMITH Treasurer 2.00 0.00 X X 0 0 0 PAM WILLIAMS Director 1.00 0.00 X 0 0 0 JULIE SHELDON Vice President 1.00 0.00 X X 0 0 0 93866 0 false false false 0 186539 291315 477854 CONFERENCES 143487 143487 RESEARCH 669136 669136 812623 0 0 0 0 0 23750 186539 53604 -29854 0 0 Misc revenue 900099 2002 2002 2002 1262625 2002 812623 62385 62385 0 25546 25546 0 93866 79786 4693 9387 0 264957 233570 10902 20485 0 6263 5470 273 520 30675 26788 1333 2554 0 2376 2376 14855 2253 10352 2250 0 0 0 50000 50000 0 4287 3317 416 554 0 0 4828 3788 452 588 20943 20943 0 150551 150551 0 0 0 4650 2290 1153 1207 PROJECT EXPENSES 55129 55129 PROGRAM COSTS AND MATERIALS 16109 16109 TELECOMMUNICATION & TECHNOLOGY 10980 5777 2125 3078 DUES AND SUBSCRIPTIONS 6952 6255 349 348 8703 4005 697 4001 834055 703962 35121 94972 1093945 1510108 0 79802 116060 0 0 0 0 0 3954 18147 0 0 0 0 0 0 1177701 1644315 8582 46626 8582 46626 X 1134119 1562689 35000 35000 1169119 1597689 1177701 1644315 428570 X false true X true false X 235058 345058 634893 804129 477854 2496992 0 0 235058 345058 634893 804129 477854 2496992 0 2496992 0 0 0 2496992 812623 1.00000 1.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1265639 3014 3014 1262625 1262625 837069 3014 3014 834055 834055 true UK GENETIC TESTING 25546 Wire 1 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US The funds for genetic testing are monitored in the following way:Every three months The University of Exeter Medical School in the UK sends a summary report showing the number of patients tested, the countries of referral, the genetic results by gene, the number of mutations identified and the countries from which the patients have been referred. All new research findings which have used samples recruited through this project will be included in confidence in the quarterly report.The reports issued to the referring clinicians for all of the genetic testing undertaken using these funds will clearly state that the testing has been funded by CHI. A CHI patient information sheet together with information on how to join the CHI Registry will accompany each patient report. false SUGAR SOIREE 210289 186539 23750 50303 3301 210289 186539 23750 50303 3301 53604 -29854 true UNIVERSITY OF PENNSYLVANIA 3535 MARKET STREET PHILIDELPHIA PA 19104 40000 0 RESEARCH 0 1 Grantmaker's Description of How Grants are Used The University of Pennsylvania grant: CHI chose to provide a grant in the amount of $40,000 to The University of Pennsylvania Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program (the Program) for congenital hyperinsulinism research.The Program is the only program of its kind to match funds and manage a research grant for congenital hyperinsulinism with guidance from CHI. All individuals holding a faculty-level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation were eligible to respond to this Request for Applications written by CHI. The grant was made available for an innovative, pre-clinical or clinical study that has the potential to lead to: (1) faster and more accurate diagnoses of congenital hyperinsulinism (HI); (2) better HI treatment; (3) a cure for HI; or (4) quality of life improvement for those affected by HI. This grant is made possible by Team Raring to Go for CHI, and CHI and the University of Pennsylvania.CHI recommends grant reviewers for the process which is overseen by The Orphan Disease Center of the University of Pennsylvania. Form 990, Part VI, Section B, Line 11b A copy of the Form 990 is provided to the President and Treasurer of the Board of Trustees for review prior to filing and a copy of the Form 990 is provided to the full Board prior to filing. Form 990, Part VI, Section B, Line 12c The President of the Board oversees and monitors the adherence to the Conflict of Interest policy. Board members are required to sign and submit the Conflict of Interest policy forms which are reviewed and maintained by the President. Form 990, Part VI, Section B, Line 15a The Executive Committee reviews current comparative salaries based on national online resources and makes the salary determination based on performance, experience and longevity with CHI. Form 990, Part VI, Section C, Line 18 The Form 990 is made available to the public upon request. Form 990, Part VI, Section C, Line 19 The Form 990 is made available to the public upon request.