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PeerBasis
Compensation Comparability Determination

Xeroderma Pigmentosum Family Support

Executive Director / CEO

EIN 593824809
CA · NTEE H80
FY ending 2024-12-31
June 9, 2026

This analysis benchmarks the total compensation of Michele Milota, Executive Director / CEO ($25,000) against every comparable organization that fit the selection criteria — 27 in total — drawn systematically from IRS Form 990 filings, not a hand-picked subset.

Compensation sits at approximately the 48th percentile of comparable organizationswithin the typical range

Benchmarked executive: Michele Milota — reported title “CO-EXECUTIVE DIRECTOR”, a direct title match to the Executive Director / CEO role.

How comparable organizations were selected

27 organizations qualified on sector, size, and geography 27 within the band form the benchmarked peer set.

Distribution of comparable compensation

$2,000 total compensation of comparable organizations → $761,351 $25,000
$5,36810th
$10,00725th
$26,573Median
$69,41275th
$222,34390th
$25,000This org · 48th
p10$5,368
p25$10,007
p50$26,573
p75$69,412
p90$222,343
$25,000

Comparable organizations

Each figure is Form 990 Part VII columns D + F (reportable pay plus other compensation and benefits; column F may include amounts from related organizations), normalized to CA cost of living (BEA RPP, 2023) and to its filing year (CPI-U); the reported amount is on each linked 990.

OrganizationStateRevenueMatched titleComp
(reported)
Comp
(adjusted)
FY
The Parkinson Alliance Inc NJ$85,580 President & Ceo $57,692 $59,652 2024
Arizona Infectious Disease Society Inc AZ$84,010 President $6,900 $7,685 2024
The International Genomics Consortium AZ$83,902 Ceo $663,981 $761,351 2023
Rpa Research & Education Foundation MD$87,336 Executive Director $17,583 $19,037 2024
Beth Israel Deaconess Department Of MA$89,438 Director (Ex-officio) (Hmfp Ceo) $109,829 $114,295 2024
Northeast Osteopathic Medical ME$90,000 Executive Di $180,075 $214,988 2023
Cardiovascular & Imaging Research Foundation Of Ny NY$90,731 Principal Investigator $200,000 $215,475 2023
Post-finasteride Syndrome Foundation NJ$91,449 President $24,000 $24,815 2024
The Tiller Foundation AZ$93,604 President & Director $24,000 $27,520 2023
Val Skinner Foundation Inc NJ$96,009 Chairperson $7,500 $7,755 2024
Children's Cancer Aid And Research Institute AZ$98,592 President $29,575 $32,939 2024
Northwell Health Medical Pa Pc NY$71,513 Ceo $75,656 $79,172 2024
Anchorage York Rite Foundation Inc AK$102,219 Secretarytreasurer $5,680 $6,289 2024
Tri County Development Corp TN$102,667 President/ceo $8,413 $10,241 2024
The Healthy Birth And Infant Brains WY$67,642 Executive Director $20,000 $24,802 2024
Allergists For Israel OH$106,610 Administrator $3,250 $3,986 2024
The Alliance For Benzodiazepine Best Practices OR$109,326 Medical Director $24,000 $26,573 2023
The Foundation For Embryonic Competence NJ$60,778 Scientific Director $225,000 $232,645 2024
The Salgi Esophageal Cancer Research Foundation RI$110,298 Vice President $8,800 $9,772 2024
University Kidney Research Organization CA$110,733 President $2,000 $2,000 2024
Heart And Stroke Research Fund AZ$112,297 President $2,000 $2,170 2025
Ghost Tree Invitational Ltd OR$112,403 Vice Preside $12,000 $12,905 2024
Mind First Foundation MA$58,286 President $232,667 $242,129 2024
Detroit International Research And MI$116,460 Executive Di $25,992 $31,069 2024
Vincera Foundation PA$116,830 Executive Dir. $30,000 $34,646 2024

Comp (reported) is the figure on each organization's Form 990 (columns D + F); Comp (adjusted) normalizes it to CA cost of living and 2024 dollars. Click any organization to verify the figure on ProPublica.

Methodology

Comparable organizations were drawn from electronically filed IRS Form 990 returns and matched on sector (NTEE code), budget (a size-adaptive revenue band that tightens as the organization grows), and geography (same-state first, broadening only when too few peers qualify); every organization within the band forms the peer set. To compare fairly across regions and years, peer compensation is normalized to CA cost of living (BEA Regional Price Parities, 2023) and to the subject's filing year (CPI-U). The figure benchmarked is Form 990 Part VII, Section A, columns D + F — reportable pay plus other compensation, benefits, and deferred amounts (column F may include amounts from related organizations) — with the chief executive matched by role. Related-organization amounts (column E) and institutional trustees are excluded. Full methodology: peerbasis.org/methodology.

Sample, role match & sensitivity

Sensitivity — the subject's percentile under alternative compensation definitions:

BasisSubject percentile
Total compensation (D + F), cost-of-living + inflation adjusted — the PeerBasis default48th
Total compensation (D + F), as reported (no adjustments)59th
Reportable pay only (column D), adjusted59th
All sources (D + E + F), adjusted41st

If the percentile moves materially across these definitions, the result is sensitive to methodology choices, and the board should weigh which basis best fits its facts.

Rebuttable presumption of reasonableness · 26 CFR 53.4958-6

Compensation paid by a tax-exempt organization is presumed reasonable — shifting the burden to the IRS — when three requirements are met. This report supplies the comparability data for the second. The board should record the following in its minutes concurrently with its decision:

Draft board minutes — executive compensation

  1. The compensation of the Executive Director / CEO (Michele Milota) was approved in advance by [the Board / Compensation Committee], composed of members with no conflict of interest with respect to the arrangement.
  2. Prior to its determination, the authorized body obtained and relied upon appropriate comparability data, namely the PeerBasis Compensation Comparability Determination dated June 9, 2026, comparing compensation against 27 similarly situated organizations (Same NTEE major group (H), nationwide + budget 0.67–1.5× revenue).
  3. The authorized body determined that total compensation of $25,000 is reasonable (approximately the 48th percentile of comparable organizations) and documented the basis for this determination concurrently, on [date], by a vote of [__ for / __ against].

Sources: IRS Form 990 e-file data (apps.irs.gov); IRS Business Master File (NTEE classification). Every figure traces to an original public filing — click any organization above to verify it on ProPublica. PeerBasis is a service of Prismind Analytics; its methodology is published, was commissioned for independent adversarial review, and discloses its own limitations. This report is comparability data to support a board's good-faith determination under IRC 4958; it is not legal or tax advice. Generated by PeerBasis on June 9, 2026.