Overview
What is Huntington Study Group Ltd?
Huntington Study Group Ltd is a prominent nonprofit organization, predominantly comprised of medical professionals, researchers, scientists, and Huntington's disease (HD) experts, primarily from academic and research institutions worldwide. Based in Rochester, New York, this organization collaborates with various sponsors, such as government entities, industries, foundations, to develop treatments benefiting HD patients and their families. Since 1993, Huntington Study Group Ltd has spearheaded cooperative therapeutic research, leading to the introduction of two FDA-approved HD treatments (Tetrabenazine and Deutetrabenazine). The organization continues to facilitate clinical research studies, partnering with pharmaceutical companies, private foundations, the National Institutes of Health (NIH), and the FDA Orphan Drug Products Divisions for trials and observational studies. Huntington Study Group Ltd is committed to advancing knowledge about HD causes, disease progression, and treatment, ensuring data transparency, and fostering democratic governance in its activities.
Official website here: www.huntingtonstudygroup.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 96% (Four-Star out of Four Stars)
Huntington Study Group Ltd has achieved a commendable Four-Star rating, reflecting its strong commitment to accountability and finance. The organization scored 96%, indicating a high level of transparency and responsible management of its resources. The overall score is derived entirely from the Accountability & Finance beacon, underlining the importance of these factors in evaluating the charity's effectiveness.
One of the key strengths noted in the evaluation is the governance structure, with 80% of board members being independent. This independence contributes to sound decision-making and conflict of interest management, ensuring that the organization's focus remains on its mission. Additionally, the charity has robust policies in place for whistleblower protection and document retention, which further showcase its dedication to ethical practices.
Despite its strengths, the data does not disclose any specific programmatic impact or user feedback regarding the effectiveness of its initiatives. While the financial metrics suggest efficient use of funds—with a program expense ratio of 82.73%—potential donors may seek more comprehensive information about the outcomes of the charity's work. Overall, Huntington Study Group Ltd demonstrates strong financial health and governance, making it a reliable choice for donors looking to support its mission.
This AI summary has been generated from information found on Charity Navigator.
Is Huntington Study Group Ltd legitimate?
Huntington Study Group Ltd is a legitimate nonprofit organization registered as a 501(c)(3) entity. Huntington Study Group Ltd 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: $430,772
Professional Fundraising Fees: $0
Other Salaries and Wages: $898,882
For more financial information, click here
Official website here: www.huntingtonstudygroup.org
What is the mission statement of Huntington Study Group Ltd?
The Huntington Study Group Ltd is committed to its mission of seeking treatments that make a significant impact on individuals affected by Huntington Disease (HD). This organization focuses primarily on the conceptualization, execution, analysis, reporting, and communication of clinical research, encompassing treatment and observational trials. Their primary goal is to alleviate the burdens and slow down the progression of HD, while also prioritizing initiatives that can positively impact patient care. Additionally, the Huntington Study Group collaborates with various entities, such as government, foundations, industry, and the HD community, to effectively plan, execute, and disseminate research and new knowledge related to HD and related disorders.
Official website here: www.huntingtonstudygroup.org
Who is the CEO of Huntington Study Group Ltd?
Shari Kinel is the Treasurer of Huntington Study Group Ltd. The CEO's salary of Huntington Study Group Ltd is $235,111 and their total compensation is $256,547.
Official website here: www.huntingtonstudygroup.org
What is the revenue of Huntington Study Group Ltd?
Huntington Study Group Ltd's revenue in 2022 was $6,746,002.
Official website here: www.huntingtonstudygroup.org
Who are the executives of Huntington Study Group Ltd and what are their salaries?
The average compensation at Huntington Study Group Ltd during 2022 was $53,186. There are 25 employees and 28 volunteers at Huntington Study Group Ltd.
Here are 11 key members and their salaries (Huntington Study Group Ltd's CEO's salary is $235,111 and their total compensation is $256,547):
- Compensation: $16,000
- Related: $0
- Other: $0
- Compensation: $235,111
- Related: $0
- Other: $21,436
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $144,707
- Related: $0
- Other: $13,518
- Compensation: $157,245
- Related: $0
- Other: $20,978
- Compensation: $139,533
- Related: $0
- Other: $19,788
- Compensation: $140,507
- Related: $0
- Other: $13,600
- Compensation: $137,784
- Related: $0
- Other: $29,594
- Compensation: $200,056
- Related: $0
- Other: $16,115
Official website here: www.huntingtonstudygroup.org
Where can I find the form 990 for Huntington Study Group Ltd?
Huntington Study Group Ltd's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.huntingtonstudygroup.org
Learn more at the official website: www.huntingtonstudygroup.org
Mission Statement of Huntington Study Group Ltd
The Huntington Study Group Ltd is committed to advancing knowledge about Huntington Disease (HD) and related disorders. Their mission is threefold: firstly, they prioritize initiatives that have the potential to significantly impact patient care. Secondly, they strive to expand understanding of the cause, disease progression, and treatment options for HD. Lastly, they collaborate with various entities such as governments, foundations, industries, and the HD community to effectively plan, execute, and disseminate research findings related to HD. In essence, the Huntington Study Group Ltd is dedicated to seeking treatments that can make a difference in the lives of those affected by HD, while simultaneously contributing to the scientific community's collective understanding of this debilitating disease.
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Impact
July, 2024
Huntington Study Group Ltd has had a significant impact in advancing knowledge about Huntington disease and related disorders. Through its network of clinicians, research investigators, scientists, and HD experts, the organization has been instrumental in developing treatments that make a difference for HD patients and families. The HSG has conducted cooperative therapeutic research since 1993, leading to the development of the Unified Huntington's Disease Rating Scale and longitudinal database. Notably, the HSG has brought the only two FDA-approved HD treatments, tetrabenazine and deutetrabenazine, to market.
By partnering with various sponsors, including pharmaceutical companies, private foundations, the National Institutes of Health, and the FDA Orphan Drug Products divisions, the HSG has been involved in developing and conducting trials and observational studies. The organization is committed to advancing knowledge about the cause, disease progression, and treatment of HD, as well as ensuring full disclosure of research results and protection against conflicts of interest.
Overall, the Huntington Study Group's dedication to seeking treatments that make a difference to those affected by Huntington disease has had a tangible impact on patient care and the broader understanding of this disorder.
This information is meant to be a general summary of Huntington Study Group Ltd. 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.
- Investment Income: $111,436
- Program Service Revenue: $6,190,676
- Gross Receipts: $6,746,002
Assets and Liabilities:
- Total Assets: $8,704,616
- Total Liabilities: $2,783,750
- Net Assets: $5,920,866
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Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
PROGRAM SERVICE REVENU
Revenue
$5,079,010
LICENSE FEES
Revenue
$789,015
ANNUAL MEETING REVENUE
Revenue
$202,651
MANAGEMENT FEE
Revenue
$120,000
Organization Details
Founding Year
2012
Phone
(800) 487-7671Principal Officer
Shari Kinel
Main Address
95 ALLENS CREEK BLDG 1 132, ROCHESTER, NY, 14618
Website
www.huntingtonstudygroup.orgNTEE Category
Code: G20 - Disease
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