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Hereditary Neuropathy Foundation Inc

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 134137654 ✦ New york city, NY ✦ Designated as a 501(c)(3)

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Overview

What is Hereditary Neuropathy Foundation Inc?

Hereditary Neuropathy Foundation Inc, based in New York City, New York, is a dedicated nonprofit organization. Its primary mission involves supporting projects through the Therapeutic Research in Accelerated Discovery (TRIAD) program. This collaborative initiative brings together academia, government, and industry leaders in healthcare, biotech, and pharmaceuticals to develop treatments and potential cures for Charcot-Marie-Tooth (CMT) disease. HNF's patient registry, Global Registry for Inherited Neuropathies (GRIN), collects comprehensive natural history studies for all CMT subtypes, integrating both patient-reported and clinical data, which is essential for drug discovery. Furthermore, education and support of the CMT community are key components of HNF's mission, aiming to improve the quality of life for those affected by the condition. With a team of just two individuals, HNF Inc. demonstrates a strong commitment to its cause.


Official website here: www.hnf-cure.org

What are the reviews and ratings of this charity?

Charity Navigator Rating: 100%

The Hereditary Neuropathy Foundation Inc has received a four-star rating from Charity Navigator, signifying exceptional accountability and finance practices. The organization scored a perfect 100% in this category, demonstrating strong governance, independence on its board, and robust financial oversight, which reflects its commitment to transparency and responsible management of funds.

User reviews reflect a mix of strong support and some skepticism. Many individuals praise the foundation for its vital role in raising awareness and funding research for Charcot-Marie-Tooth (CMT) disease, a condition that significantly impacts those affected. Supporters share personal stories of resilience and gratitude, highlighting how the foundation has empowered them and their families in the fight against this often-overlooked condition.

However, negative feedback from some users raises concerns about the integrity of the reviews and the foundation's operational practices. While some users have called it a "sham" organization, attributing ulterior motives to its fundraising efforts, the overwhelming sentiment from other reviewers emphasizes the positive impact the foundation has had on the CMT community. This dichotomy suggests a need for potential donors and participants to carefully consider both perspectives.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

Is Hereditary Neuropathy Foundation Inc legitimate?

Hereditary Neuropathy Foundation Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Hereditary Neuropathy Foundation Inc 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: $60,000
Professional Fundraising Fees: $0
Other Salaries and Wages: $53,077

For more financial information, click here


Official website here: www.hnf-cure.org

What is the mission statement of Hereditary Neuropathy Foundation Inc?

The Hereditary Neuropathy Foundation Inc is a non-profit organization dedicated to supporting projects through the Therapeutic Research in Accelerated Discovery (TRIAD) program. This collaborative effort involves academia, government, and industry to develop treatments for Charcot-Marie-Tooth (CMT), a group of inherited neurological disorders. The TRIAD program spans the drug discovery, development, and diagnostics continuum, with education and support of the CMT community as a key component of the foundation's mission. The aim is to improve the quality of life for individuals affected by CMT.


Official website here: www.hnf-cure.org

Who is the CEO of Hereditary Neuropathy Foundation Inc?

Allison Moore is the Founder And Chief Executiv of Hereditary Neuropathy Foundation Inc.


Official website here: www.hnf-cure.org

What is the revenue of Hereditary Neuropathy Foundation Inc?

Hereditary Neuropathy Foundation Inc's revenue in 2022 was $1,259,879.


Official website here: www.hnf-cure.org

Who are the executives of Hereditary Neuropathy Foundation Inc and what are their salaries?

The average compensation at Hereditary Neuropathy Foundation Inc during 2022 was $56,538. There are 2 employees and 12 volunteers at Hereditary Neuropathy Foundation Inc.


Here are 15 key members and their salaries:


Allison Moore (Founder And Chief Executiv)
  • Compensation: $0
  • Related: $0
  • Other: $44,395
Joy Andal Kaye (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kara Sprague (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Matthew Downing (Chairman)
  • Compensation: $0
  • Related: $0
  • Other: $0
Debi Houilares (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kerin Reilly (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Gretchen Cappiello (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Deborah Newcomb (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Brooke Warren (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Robert Kauffman (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Dominic Hadeed (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Sital Bhavsar (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Poya Ghasri (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Natalia Salejko (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Courtney Hollett (Executive Director)
  • Compensation: $60,000
  • Related: $0
  • Other: $0


Official website here: www.hnf-cure.org

Where can I find the form 990 for Hereditary Neuropathy Foundation Inc?

Hereditary Neuropathy Foundation Inc's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.hnf-cure.org

Learn more at the official website: www.hnf-cure.org

Mission Statement of Hereditary Neuropathy Foundation Inc

The Hereditary Neuropathy Foundation Inc, a non-profit organization, is committed to supporting projects through the Therapeutic Research in Accelerated Discovery (TRIAD) program. This program is a collaborative effort involving academia, government, and industry, with the primary goal of developing treatments for Charcot-Marie-Tooth (CMT), a hereditary neuropathy. The TRIAD program involves numerous groups spanning the drug discovery, drug development, and diagnostics continuum.

Beyond this, the mission of Hereditary Neuropathy Foundation Inc extends to providing education and support for the CMT community. This aim is crucial in improving the quality of life for those affected by this condition. The foundation's efforts in this regard involve more than just providing medical solutions. It is also dedicated to empowering and uplifting the CMT community, ensuring they have the resources and support they need to navigate their daily lives more effectively.

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Impact




October, 2024

The Hereditary Neuropathy Foundation Inc significantly advances the field of Charcot-Marie-Tooth disease (CMT) through its innovative Therapeutic Research in Accelerated Discovery (TRIAD) program. By fostering collaborations among academic institutions, government agencies, and industry leaders in healthcare, biotech, and pharmaceuticals, HNF plays a crucial role in pioneering drug discovery and facilitating clinical trial readiness.

Their focus on funding research grants and engaging in venture philanthropy underscores a strategic approach to expedite the development of effective treatments for CMT. The foundation's commitment to building a robust patient registry, the Global Registry for Inherited Neuropathies (GRIN), is essential for collecting comprehensive natural history data across all CMT subtypes. This unique repository combines patient-reported outcomes and clinical data, providing invaluable insights necessary for drug development and testing.

Moreover, HNF’s initiatives extend beyond research; they are dedicated to education and support for the CMT community, striving to enhance the overall quality of life for those affected by the condition. Through these multifaceted efforts, HNF is making a profound impact on the understanding and treatment of hereditary neuropathies, positioning itself as a leader in the fight against CMT.




This information is meant to be a general summary of Hereditary Neuropathy Foundation Inc. 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.

Revenue
$1,259,879 (2022)
Expenses
$759,374 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: $144,223
  • Gross Receipts: $1,328,284

Assets and Liabilities:

  • Total Assets: $1,627,053
  • Total Liabilities: $5,589
  • Net Assets: $1,621,464

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Organization Details

Founding Year

2001

Principal Officer

Allison Moore

Main Address

1641 3RD AVE 28K, NEW YORK CITY, NY, 10128

NTEE Category

Code: H129 - Medical research

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