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At NEHI Research Foundation we believe that being transparent is crucial for any non-profit organization. We understand that donating your hard earned money and soliciting contributions from family and friends is a big deal and you want to ensure that funds are being handled properly. We aim to efficiently take contributions from our supporters and put them to work in meaningful research opportunities.

NEHI Research Foundation consists entirely of volunteers and no salaries or benefits are given to our board of directors or other volunteers. We seek to be fully transparent with our finances and are happy to provide all of the information below. As a reminder, the foundation is run solely by volunteers with no wages or other compensation. Should you have any questions or desire more information please reach out to

2020 Financials

  • In 2020 the foundation was able to weather the storm that was COVID-19 and still receive significant contributions and support our largest amount of medical research yet.

  • The general summary of our 2020 financials is as follows.

    • Revenue: ​$138,237

      • $138,078 from individual contributions​

    • Expenses: ​$140,670

      • $126,029 in programs (research grants, awareness, and travel grants)

      • $10,872 in fundraising (56% of this was required regulatory filings and18% was credit card processing fees)

      • $3,846 administrative (2.7% of total expenses)

    • We ended the year with a very strong balance sheet, poised to support the most meaningful NEHI research with little obstacles.​

  • 2020 Form 990 IRS Filing - Click to view​​

2019 Financials

  • In 2019 the foundation was able to contribute to two research grants and really begin to support meaningful research that was hand selected by the independent medical advisory boards of NORD and Penn Orphan Disease Center.

  • The general summary of our financials is as follows.

    • Revenue: ​$143,735

      • $112,943 from individual contributions​

      • $30,792 net income from fundraising events

    • Expenses: ​$81,216

      • $65,​260 in programs (research grants)

      • $10,571 in fundraising (credit card processing fees and required regulatory filings make up 80% of this)

      • $5,385 management and general (6.6% of total expenses)

  • 2019 Form 990 IRS Filing - Click to view​​

2018 Financials

  • 2018 was the year the foundation launched to the public and we immediately began fundraising. Our two fundraising campaigns and first fundraising event were great successes. We issued our first contribution to research by supporting Dr. Lisa Young's genetic research at Vanderbilt University with a $20,000 directed gift. Keep up to date with how the foundation is using the rest of the funds raised in 2018 by joining our mailing list or viewing our Research page.

  • 2018 Form 990 IRS Filing - Click to view

2017 Financials

  • The foundation was officially incorporated in 2017. No fundraising took place this year and we spent all our efforts obtaining our 501(c)(3) status, getting our bylaws in place, and getting the structure of the foundation in place.

  • In 2017 we filed form 990-N with the IRS given our $3,440 in total contributions. The contributions were sourced solely from our founders and covered legal, federal regulation, information technology, and general office expenses.

  • 2017 Form 990-N IRS Filing - Click to view

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