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EIN 26-2849140

National Pku Alliance

IRS 501(c) type
501(c)(3)
Num. employees
8
City
New York
State
New York
Year formed
2008
Most recent tax filings
2022-12-01
NTEE code, primary
G80: Specifically Named Diseases
Description
National Pku Alliance advocates for individuals with Pku, providing education and support, while funding research towards treatment and a cure.
Total revenues
$2,213,963
2022
Total expenses
$1,806,805
2022
Total assets
$4,987,467
2022
Num. employees
8
2022

Program areas at National Pku Alliance

Awarded $435,718 in our research program to research projects aimed at improving Pku treatment and finding a cure.
Provided education and support to 400 patients through a virtual conference
Education and advocacy - created and released educational videos with patients and medical professionals on Pku treatment options, transitioning to adult care and maternal Pku. Developed two new mentoring programs to provide support to adults struggling to manage their Pku.

Grants made by National Pku Alliance

GranteeGrant descriptionAmount
Boston Children's HospitalPku Research$129,928
Maryland Alliance of Pku FamiliesLocal Support To Pku Community$6,775

Who funds National Pku Alliance

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Nicklaus Children's Health Care FoundationPku Education and Research Project$700,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$67,900
Vanguard Charitable Endowment ProgramFor Recipient's Exempt Purpose$58,500
...and 16 more grants received

Personnel at National Pku Alliance

NameTitleCompensation
Lisa MilbergExecutive Director$138,846
Tracy FossumDirector of Development About
Lex M. Cowsert, PhDDirector of Research Development
Christine SchlegelPast Executive Director$38,215
Richard MichauxVice President$0
...and 5 more key personnel

Financials for National Pku Alliance

RevenuesFYE 12/2022
Total grants, contributions, etc.$2,253,786
Program services$44,989
Investment income and dividends$81,652
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-49,230
Net income from fundraising events$-117,346
Net income from gaming activities$0
Net income from sales of inventory$112
Miscellaneous revenues$0
Total revenues$2,213,963

Form 990s for National Pku Alliance

Fiscal year endingDate received by IRSFormPDF link
2022-122023-04-27990View PDF
2021-122022-04-06990View PDF
2020-122021-05-20990View PDF
2019-122021-01-21990View PDF
2018-122019-11-08990View PDF
...and 10 more Form 990s

Organizations like National Pku Alliance

OrganizationLocationRevenue
TSC AllianceSilver Spring, MD$8,909,542
National MPS SocietyDurham, NC$1,837,186
Alpha-1 Foundation Alpha One FoundationMiami, FL$10,890,084
Tourette Association of AmericaBayside, NY$4,883,886
Malaria No More FundSeattle, WA$10,455,988
Solve Me CFS InitiativeGlendale, CA$5,520,483
Cure HHTMonkton, MD$2,377,085
American Partnership for Eosinophilic Disorders (APFED)Atlanta, GA$729,476
Sarcoma Foundation of AmericaDamascus, MD$3,674,023
Schizophrenia & Psychosis ActiAlexandria, VA$1,548,339
Data update history
December 24, 2023
Received grants
Identified 2 new grant, including a grant for $700,000 from Nicklaus Children's Health Care Foundation
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
September 24, 2023
Received grants
Identified 10 new grant, including a grant for $565,000 from Nicklaus Children's Health Care Foundation
July 22, 2023
Posted financials
Added Form 990 for fiscal year 2022
July 3, 2023
Updated personnel
Identified 6 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchLobbyingFundraising eventsOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringGala fundraisersTax deductible donations
General information
Address
945 Lexington Ave 269
New York, NY 10021
Metro area
New York-Newark-Jersey City, NY-NJ-PA
Website URL
npkua.org/contact-us 
Phone
(516) 443-5820
IRS details
EIN
26-2849140
Fiscal year end
December
Taxreturn type
Form 990
Year formed
2008
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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