Overview
What is Congenital Hyperinsulinism International?
Congenital Hyperinsulinism International (CHI) is a dedicated nonprofit organization, based in Glen Ridge, New Jersey, with a mission to enhance the lives of individuals affected by Congenital Hyperinsulinism (HI), a potentially life-threatening genetic disorder. CHI engages in extensive research and collaboration with medical professionals and the biopharmaceutical industry to accelerate the development of patient-centered treatments and ultimately, a cure for HI. They manage funding programs, such as the Million Dollar Bike Ride grant and the HIHA pilot grant, to support innovative studies and improve the quality of life for those affected by HI. CHI also oversees the HI Global Registry (HIGR), an online platform that allows patients to share their experiences and contribute to a better understanding of the disorder, leading to improved treatments and diagnoses. In 2022, CHI received a grant to establish the Collaborative Research Network, fostering international cooperation among researchers, clinicians, and patient advocates to advance research, develop new treatments, and improve access to care.
Official website here: www.congenitalhi.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 92% (Four-Star out of Four Stars)
Congenital Hyperinsulinism International has achieved a strong rating of 92%, indicating a high level of accountability and financial health. This score reflects the organization’s commitment to transparency and responsible financial management, primarily assessed through its accountability and finance metrics. The absence of material diversion of assets and a very low liabilities to assets ratio further underscores its solid financial standing.
The organization demonstrates strong governance with a fully independent board composed of six members, showcasing effective oversight. Additionally, it has implemented comprehensive policies regarding conflict of interest and document retention, which contribute positively to its overall accountability. However, there is one area noted for improvement: the absence of a whistleblower policy, which could enhance its governance framework.
Overall, Congenital Hyperinsulinism International reflects a well-managed nonprofit that prioritizes its mission through responsible financial practices and a commitment to accountability. The high program expense ratio of 84.79% indicates that a significant portion of its budget is directed towards its programs, which is a positive sign for donors and stakeholders interested in the impact of their contributions.
This AI summary has been generated from information found on Charity Navigator.
What do the Facebook reviews say about Congenital Hyperinsulinism International?
96% of 33 reviewers on Facebook recommend Congenital Hyperinsulinism International. Here is a summary of their reviews:
Many users express deep gratitude for the support they have received from the nonprofit, highlighting its significant impact on families affected by congenital hyperinsulinism. The overwhelming sentiment is one of appreciation for the resources and assistance provided, indicating that the organization meets the needs of its community effectively.
Overall, the responses reflect a strong satisfaction with the services offered, emphasizing the nonprofit's commitment to helping individuals navigate the challenges associated with this condition. The positive feelings are palpable, showcasing a community that feels supported and empowered through the organization's efforts.
This AI summary has been generated from reviews found on Facebook.
Is Congenital Hyperinsulinism International legitimate?
Congenital Hyperinsulinism International is a legitimate nonprofit organization registered as a 501(c)(3) entity. Congenital Hyperinsulinism International submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $93,866
Professional Fundraising Fees: $0
Other Salaries and Wages: $264,957
For more financial information, click here
Official website here: www.congenitalhi.org
What is the mission statement of Congenital Hyperinsulinism International?
Congenital Hyperinsulinism International, often referred to as CHI, is committed to enhancing the lives of individuals impacted by congenital hyperinsulinism, a genetically inherited disorder. This condition can lead to severe hypoglycemia, potentially causing seizures, brain damage, or even death if left untreated. CHI's primary mission is to provide education and support to the families of diagnosed individuals. By raising awareness of the disorder, CHI aims to facilitate timely diagnoses, thereby reducing the risk of death and brain damage. Furthermore, CHI advocates for improved care and better neurological outcomes. In addition to education and awareness, CHI supports research and development to deepen understanding of the condition and seek better treatments and management methods. The ultimate goal is to discover a cure for congenital hyperinsulinism.
Official website here: www.congenitalhi.org
Who is the CEO of Congenital Hyperinsulinism International?
Sheila Bose is the President of Congenital Hyperinsulinism International.
Official website here: www.congenitalhi.org
What is the revenue of Congenital Hyperinsulinism International?
Congenital Hyperinsulinism International's revenue in 2022 was $1,262,625.
Official website here: www.congenitalhi.org
Who are the executives of Congenital Hyperinsulinism International and what are their salaries?
The average compensation at Congenital Hyperinsulinism International during 2022 was $71,765. There are 5 employees and 130 volunteers at Congenital Hyperinsulinism International.
Here are 7 key members and their salaries:
- Compensation: $93,866
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Official website here: www.congenitalhi.org
Where can I find the form 990 for Congenital Hyperinsulinism International?
Congenital Hyperinsulinism International's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.congenitalhi.org
Learn more at the official website: www.congenitalhi.org
Mission Statement of Congenital Hyperinsulinism International
Congenital Hyperinsulinism International, abbreviated as CHI, is committed to enhancing the lives of individuals afflicted by congenital hyperinsulinism, a life-threatening genetic disorder. This disorder leads to severe hypoglycemia, a condition marked by low blood sugar levels, which can result in seizures, brain damage, or even death if left untreated. The organization's mission is threefold.
Firstly, CHI aims to provide education and information to families of those diagnosed with congenital hyperinsulinism. This includes babies, children, and adults living with the condition. By disseminating knowledge, CHI endeavors to foster timely diagnoses, thereby reducing instances of death and brain damage. Early diagnosis and appropriate management can significantly improve the neurological outcomes for individuals affected by this condition.
Secondly, CHI is dedicated to promoting awareness of congenital hyperinsulinism. By increasing public knowledge, the organization hopes to expedite diagnoses, ultimately leading to better care and improved treatment options. A well-informed society is better equipped to support individuals and families living with the condition, fostering a more compassionate and understanding environment.
Lastly, CHI supports research and development efforts aimed at deepening our understanding of congenital hyperinsulinism. This research is integral to the development of better treatments and management strategies for the condition. Ultimately, the organization's ultimate goal is to work towards a cure for congenital hyperinsulinism, improving the quality of life for those affected by this life-threatening disorder.
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Impact
October, 2024
Congenital Hyperinsulinism International (CHI) significantly impacts the lives of individuals affected by congenital hyperinsulinism (HI), a severe genetic disorder characterized by excessive insulin production, which can lead to dangerous hypoglycemia if untreated. The organization focuses on improving patient outcomes through various initiatives, including supporting research and clinical studies that aim to enhance understanding, diagnosis, and treatment of the condition.
By facilitating collaboration between researchers, clinicians, and patient advocates, CHI has established a Collaborative Research Network, which creates a structured approach to addressing critical gaps in HI research. This network has produced a prioritized agenda for developing faster diagnoses, new treatments, and standardized clinical guidelines, significantly influencing the medical approach to HI.
The HI Global Registry (HIGR) serves as a vital resource for the patient community, allowing individuals to share their experiences and contribute to data collection that can lead to improved treatments and care strategies. In line with this, CHI has made strides in integrating the patient voice into medical literature, having authored several peer-reviewed publications that highlight the experiences and challenges faced by those living with HI.
Through initiatives like the Million Dollar Bike Ride grant program and the administration of pilot grants for innovative research, CHI actively invests in studies that have the potential to improve the quality of life for those affected by HI and hyperinsulinism hyperammonemia (HIHA). Furthermore, the organization promotes the establishment of Centers of Excellence in HI care, ensuring that families have access to specialized, multidisciplinary support at leading hospitals.
Overall, CHI's efforts in awareness, education, and research not only enhance the lives of patients but also pave the way for a greater understanding of congenital hyperinsulinism, ultimately aiming for better outcomes and a potential cure for this life-threatening disorder.
This information is meant to be a general summary of Congenital Hyperinsulinism International. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Program Service Revenue: $812,623
- Gross Receipts: $1,316,229
Assets and Liabilities:
- Total Assets: $1,644,315
- Total Liabilities: $46,626
- Net Assets: $1,597,689
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Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
CONFERENCES
Revenue
$143,487
RESEARCH
Revenue
$669,136
Organization Details
Founding Year
2006
Phone
(973) 566-0334Principal Officer
Sheila Bose
Main Address
PO BOX 135, GLEN RIDGE, NJ, 07028
Website
www.congenitalhi.orgNTEE Category
Code: G12 - Disease
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