Charity Report

  • Issued: December 2023
  • Expires: December 2025

Hereditary Neuropathy Foundation

Accredited Charity

Meets Standards

212-860-5405

1641 3rd Ave #28K
Manhattan, NY 10128

http://www.hnf-cure.org
Accredited Charity

212-860-5405

1641 3rd Ave #28K
Manhattan, NY 10128

http://www.hnf-cure.org
Accredited Charity

Accredited Charity

Meets Standards

Standards For Charity Accountability

Governance

  1. Board Oversight

    Oversight of Operations and Staff: Standard 1

    Description
    Organizations shall have a board of directors that provides adequate oversight of the charity's operations and its staff. Indication of adequate oversight includes, but is not limited to, regularly scheduled appraisals of the CEO's performance, evidence of disbursement controls such as board approval of the budget, fundraising practices, establishment of a conflict of interest policy, and establishment of accounting procedures sufficient to safeguard charity finances.

    The organization meets this standard.

  2. Board Size

    Number of Board Members: Standard 2

    Description
    Soliciting organizations shall have a board of directors with a minimum of five voting members.

    The organization meets this standard.

  3. Board Meetings

    Frequency and Attendance of Board Meetings: Standard 3

    Description
    An organization shall have a minimum of three evenly spaced meetings per year of the full governing body with a majority in attendance, with face-to-face participation. A conference call of the full board can substitute for one of the three meetings of the governing body. For all meetings, alternative modes of participation are acceptable for those with physical disabilities.

    The organization meets this standard.

  4. Board Compensation

    Compensated Board Members: Standard 4

    Description
    Not more than one or 10% (whichever is greater) directly or indirectly compensated person(s) serving as voting member(s) of the board. Compensated members shall not serve as the board's chair or treasurer.

    The organization meets this standard.

  5. Conflict of Interest

    Conflict of Interest: Standard 5

    Description
    No transaction(s) in which any board or staff members have material conflicting interests with the charity resulting from any relationship or business affiliation. Factors that will be considered when concluding whether or not a related party transaction constitutes a conflict of interest and if such a conflict is material, include, but are not limited to: any arm's length procedures established by the charity; the size of the transaction relative to like expenses of the charity; whether the interested party participated in the board vote on the transaction; if competitive bids were sought and whether the transaction is one-time, recurring or ongoing.

    The organization meets this standard.

Measuring Effectiveness

  1. Effectiveness Policy

    Board Policy on Effectiveness: Standard 6

    Description
    Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

    The organization meets this standard.

  2. Effectiveness Report

    Board Approval of Written Report on Effectiveness: Standard 7

    Description
    Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.

    The organization meets this standard.

Finances

  1. Program Expenses

    Program Service Expense Ratio: Standard 8

    Description
    Spend at least 65% of its total expenses on program activities.

    The organization meets this standard.

  2. Fundraising Expenses

    Fundraising Expense Ratio: Standard 9

    Description
    Spending should be no more than 35% of related contributions on fundraising. Related contributions include donations, legacies, and other gifts received as a result of fundraising efforts.

    The organization meets this standard.

  3. Accumulating Funds

    Ending Net Assets: Standard 10

    Description
    Avoid accumulating funds that could be used for current program activities. To meet this standard, the charity's unrestricted net assets available for use should not be more than three times the size of the past year's expenses or three times the size of the current year's budget, whichever is higher.

    The organization meets this standard.

  4. Audit Report

    Financial Statements: Standard 11

    Description
    Make available to all, on request, complete annual financial statements prepared in accordance with generally accepted accounting principles. When total annual gross income exceeds $1 million, these statements should be audited in accordance with generally accepted auditing standards. For charities whose annual gross income is less than $1 million, a review by a certified public accountant is sufficient to meet this standard. For charities whose annual gross income is less than $250,000, an internally produced, complete financial statement is sufficient to meet this standard.

    The organization meets this standard.

  5. Detailed Expense Breakdown

    Detailed Functional Breakdown of Expenses: Standard 12

    Description
    Include in the financial statements a breakdown of expenses (e.g., salaries, travel, postage, etc.) that shows what portion of these expenses was allocated to program, fundraising, and administrative activities. If the charity has more than one major program category, the schedule should provide a breakdown for each category.

    The organization meets this standard.

  6. Accurate Expense Reporting

    Accuracy of Expenses in Financial Statements: Standard 13

    Description
    Accurately report the charity's expenses, including any joint cost allocations, in its financial statements. For example, audited or unaudited statements which inaccurately claim zero fundraising expenses or otherwise understate the amount a charity spends on fundraising, and/or overstate the amount it spends on programs will not meet this standard.

    The organization meets this standard.

  7. Budget Plan

    Budget: Standard 14

    Description
    Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fundraising, and administration.

    The organization meets this standard.

Fundraising & Info

  1. Truthful Materials

    Misleading Appeals: Standard 15

    Description
    Have solicitations and informational materials, distributed by any means, that are accurate, truthful and not misleading, both in whole and in part. Appeals that omit a clear description of program(s) for which contributions are sought will not meet this standard. A charity should also be able to substantiate that the timing and nature of its expenditures are in accordance with what is stated, expressed, or implied in the charity's solicitations.

    The organization meets this standard.

  2. Annual Report

    Annual Report: Standard 16

    Description
    Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fundraising and administrative categories as in the financial statements, and (iii) ending net assets.

    The organization meets this standard.

  3. Website Disclosures

    Web Site Disclosures: Standard 17

    Description
    Include on any charity websites that solicit contributions, the same information that is recommended for annual reports, as well as the mailing address of the charity and electronic access to its most recent IRS Form 990.

    The organization meets this standard.

  4. Donor Privacy

    Privacy for Written Appeals & Internet Privacy: Standard 18

    Description
    Address privacy concerns of donors by (a) providing in written appeals, at least annually, a means (e.g., such as a check off box) for both new and continuing donors to inform the charity if they do not want their name and address shared outside the organization, (b) providing a clear, prominent and easily accessible privacy policy on any of its websites that tells visitors (i) what information, if any, is being collected about them by the charity and how this information will be used, (ii) how to contact the charity to review personal information collected and request corrections, (iii) how to inform the charity (e.g., a check off box) that the visitor does not wish his/her personal information to be shared outside the organization, and (iv) what security measures the charity has in place to protect personal information.

    The organization meets this standard.

  5. Cause Marketing Disclosures

    Cause Related Marketing: Standard 19

    Description
    Clearly disclose how the charity benefits from the sale of products or services (i.e., cause-related marketing) that state or imply that a charity will benefit from a consumer sale or transaction. Such promotions should disclose, at the point of solicitation: (a) the actual or anticipated portion of the purchase price that will benefit the charity (e.g., 5 cents will be contributed to abc charity for every xyz company product sold), (b) the duration of the campaign (e.g., the month of October), (c) any maximum or guaranteed minimum contribution amount (e.g., up to a maximum of $200,000).

    The organization meets this standard.

  6. Complaints

    Complaints: Standard 20

    Description
    Respond promptly to and act on complaints brought to its attention by the BBB Wise Giving Alliance and/or local Better Business Bureaus about fundraising practices, privacy policy violations and/or other issues.

    The organization meets this standard.

Conclusion

Hereditary Neuropathy Foundation meets the 20 Standards for Charity Accountability.

Purpose

  • Year, State Incorporated

    2001, NY

  • Stated Purpose

    Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support people living with CMT and their families with critical information to improve quality of life, and fund research that will lead to treatments and cures.


Programs

HNF’s patient centered programs are supportive of patients, caregivers, health care providers and others (biotech, pharma, and regulatory agencies) to develop therapies for Charcot-Marie-Tooth (CMT) and related inherited neuropathies (IN).CMT is a group of inherited neurological disorders that primarily affect the peripheral nerves. These peripheral nerves are responsible for transmitting signals between the brain and spinal cord to the muscles and sensory organs throughout the body. The most common symptoms include muscle weakness, muscle atrophy (shrinkage), and sensory loss. People with CMT often experience difficulties with muscle coordination, balance, and walking. In some cases, the disease can affect the muscles of the hands, leading to issues with fine motor skills.HNF’s Therapeutic Research in Accelerated Discovery (TRIAD) is a collaborative effort of academia, government, and industry to develop treatments for CMT. TRIAD involves many groups that span the drug discovery, drug development, and diagnostics continuum. HNF raises funds to support the development of therapies for many CMT subtypes. The innovative research projects include the development of cell and animal models, and biomarker development. Projects are funded based upon their likelihood of success and include FDA repurposed drugs, novel drugs, and gene therapies. HNF is largely focused on clinical trial readiness to ensure success. Currently, HNF has 30 designated CMT Center of Excellence (6 are pediatric sites) that demonstrate strengths in providing excellence in clinical care and most of them participate in CMT clinical trials. HNF continues its regulatory initiatives by building upon the HNF hosted Externally-led Patient Focused Drug Development (PFDD) meeting with FDA in 2018 and Critical Path Innovation Meeting (CPIM) with a focus on incorporating decentralized and video capture for upcoming clinical trials.As part of TRIAD, the Global Registry for Inherited Neuropathies (GRIN) was established as an IRB-approved patient registry and research consortium to conduct natural history studies for all CMT subtypes. GRIN is a user-friendly online platform allowing patients, caregivers, clinicians, and researchers the ability to manage health data to elevate patient care, advance research, support clinical trial designs and enhance therapy development with TRIAD partners. The data collected is stored, analyzed and published by HNF staff with the oversight and input of TRIAD Council experts. Data includes patient-reported details, curated genetic report uploads and results of clinical CMT validated scales. The data has been instrumental in identifying the burden, diagnostic journey and prevalence of CMT.HNF continues to expand its resources to support the CMT community with a focus on enhancing clinical trial endpoints and outcomes. In 2021, HNF conducted an innovative remote data collection pilot study utilizing the power of computer learning by developing the CMT Mobile app. The CMT Mobile App empowered the patient to collect prescribed photos and videos in their own home to precisely capture the challenges with activities of daily living (disease burden) due to CMT. This study has helped to better identify disease progression and/or improvement of CMT characteristics and symptoms.In 2023, HNF partnered with CombinedBrain to launch the first-ever CMT Biobank, part of the GRIN consortium. GRIN registrants have the opportunity to participate in translational research by providing samples which include blood, tissue, skin fibroblasts, Induced Pluripotent Stem Cells (iPSCs), and more. All samples are made available to the research community and industry to support the development and validation of biomarkers in CMT, an essential regulatory (FDA and EMA) requirement for clinical trials.HNF’s CMT Genie, is a patient-initiated genetic testing program to support genetic diagnosis by offering patients virtual genetic counseling, with an option to obtain a prescription for an at-home test, with a qualified genetic counselor to seek a genetic diagnosis. The CMT Genie program has supported hundreds of patients who have then agreed to upload their reports into GRIN.To financially support programs, HNF relies on Team CMT. Team CMT helps to increase awareness and raise funds. The fundraising platform is personalized for each participant to participate in events globally.The patient voice is at the core of HNF’s mission and in partnership with Inspire™ offers patients access to a robust and interactive online CMT social community with over 10,000 members.HNF’s Movement is Medicine™ (MiM) program continues to offer an adaptive fitness program for free to encourage and support physical activity and a healthy lifestyle for those people affected by CMT and other debilitating diseases. Initially launched as in person summits, quickly became virtual during COVID and continues to thrive by offering virtual classes weekly with Fitness Ambassadors.

For the year ended June 30, 2022, Hereditary Neuropathy Foundation program expenses were:

Program services $858,726
Program Expenses $858,726

Governance & Staff

  • Board Chair

    Mr. Matthew Downing, Chief Marketing Officer

  • Chair's Profession / Business Affiliation

    MedPower

  • Board Size

    14

  • Paid Staff Size

    7

Fundraising

Method(s) Used:
Invitations to fundraising events, Print advertisements (newspapers, magazines, etc.), Grant proposals, Internet, Appeals via Social Media (Facebook, etc.).

% of Related Contributions on Fundraising: 5.36%

Tax Status

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.


Financial

The following information is based on Hereditary Neuropathy Foundation's Audited financial statements for the fiscal year ending June 30, 2022

Source of Funds
Individuals $788,508
Foundation and corporations $265,906
In-kind $170,777
Realized gain on investments $142,799
Legacies and bequests $104,672
Interest and dividends $1,424
Book sales $1,418
Unrealized gain (loss) on investments $-146,841
Total Income $1,328,663

Breakdown of Expenses

Total Income $1,328,663
Total Expenses: $974,999
Program Expenses $858,726
Fundraising Expenses $71,341
Administrative Expenses $44,932
Other Expenses $0
Income in Excess of Expenses $353,664
Beginning Net Assets $1,267,800
Other Changes In Net Assets $0
Ending Net Assets $1,621,464
Total Liabilities $5,589
Total Assets $1,627,053

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