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Nonprofit · EIN 20-8237159

ALPORT SYNDROME FOUNDATION INC

Tax-exempt · PHOENIX, AZ 85048

Financials

$1M$613K2023$1.2M$1M2024
Revenue Expenses · by fiscal year end
Financials of ALPORT SYNDROME FOUNDATION INC by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2024990$1,194,735$1,003,948$190,787$2,817,931$16,538$2,801,393
December 31, 2023990$1,016,405$612,534$403,871$2,669,586$31,167$2,638,419
Financial details: 990 for the year ended December 31, 2024

Revenue

Contributions, gifts and grants
$1,063,256
Program service revenue
$0
Investment income
$131,479
Net gain from sales of assets
$36,023
Other revenue
$0

Expenses

Grants and similar amounts paid
$324,631
Compensation of officers, directors and key employees
$105,000
Other salaries and wages
$242,828
Salaries, compensation and benefits (total)
$376,180
Professional fundraising fees
$0
Accounting fees
$22,371
Travel
$48,358
Depreciation
$11,198
Program services (functional)
$916,993
Management and general (functional)
$61,776
Fundraising (functional)
$25,179

Balance sheet and other

Total assets, start of year
$2,669,586
Total assets, end of year
$2,817,931
Total liabilities, end of year
$16,538
Net assets, end of year
$2,801,393
Land, buildings and equipment
$982
Publicly traded securities
$2,141,999
Net assets without donor restrictions
$2,190,732
Net assets with donor restrictions
$610,661
Gross receipts
$1,402,656
Employees
5
Volunteers
95
Year formed
2007
State of legal domicile
AZ

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended December 31, 2024, highest compensation first.

NameTitleHours / weekCompensation
LISA BONEBRAKEEXECUTIVE DIRECTOR
Officer
65$105,000
ANDREW KRONENBERGBOARD CHAIR
Trustee or director, Officer
10$0
RYAN LINDERSECRETARY
Trustee or director, Officer
2.5$0
DANIEL KILPATRICKTREASURER
Trustee or director, Officer
5$0
SHARON LAGASCO-FOUNDER, DIRECTOR PAST CHAIR
Trustee or director, Officer
5$0
AMY RHODESDIRECTOR
Trustee or director
5$0
DECEMBER WESTDIRECTOR
Trustee or director
1$0
MARTY DUNLEAVYDIRECTOR
Trustee or director
1$0
PHILLIP KUMNICKDIRECTOR
Trustee or director
1$0
STEPHEN MALACHDIRECTOR
Trustee or director
1$0
990 for the year ended December 31, 2023: 10 people
NameTitleHours / weekCompensation
ANDREW KRONENBERGBOARD CHAIR
Trustee or director, Officer
6$0
RYAN LINDERSECRETARY
Trustee or director, Officer
2$0
MARTIN DUNLEAVYTREASURER
Trustee or director, Officer
6$0
SHARON LAGASCO-FOUNDER, DIRECTOR PAST CHAIR
Trustee or director, Officer
2$0
ANDRE WEINSTOCKDIRECTOR RESEARCH CHAIR
Trustee or director
10$0
AMY RHODESDIRECTOR FB MODERATOR
Trustee or director
4$0
DANIEL KILPATTRICKDIRECTOR FINANCE COMMITTEE
Trustee or director
2$0
PHILLIP KUMNICKDIRECTOR DEV. CHAIR
Trustee or director
2$0
STEPHEN MALACHDIRECTOR PROGRAM CHAIR
Trustee or director
6$0
LISA BONEBRAKEEXECUTIVE DIRECTOR
Officer
65$0

Address and contacts

Address (IRS master file)
1608 E BRIARWOOD TER, PHOENIX, AZ 85048-9414
In care of
% SHARON LAGAS
Principal officer (990 for 2024)
DANIEL KILPATRICK, PO BOX 4130, SCOTTSDALE, AZ 85261
Signed the 990
DANIEL KILPATRICK, TREASURER
Phone
(480) 800-3510
Return prepared by
SECHLER MORGAN CPAS PLLC

Mission

THE FOUNDATION WAS CREATED TO EDUCATE AND SUPPORT PATIENTS AND FAMILIES THAT HAVE BEEN AFFECTED BY THIS GENETIC KIDNEY DISEASE WITH A GOAL OF FUNDING RESEARCH, TO FIND MORE EFFECTIVE TREATMENT PROTOCOLS AND TO ULTIMATELY FIND A CURE.

990 for the year ended December 31, 2024

Program accomplishments

  • 570 NEW MEMBERS JOINED ASF. 527 PATIENTS ENROLLED IN THE ASF ALPORT PATIENT REGISTRY. 800 NEW MEMBERS JOINED THE ASF FACEBOOK SUPPORT GROUP. 89,000 WEBSITE VIEWS. 18,000 ASF YOUTUBE CHANNEL VIEWS. HOSTED A 2-DAY IN-PERSON MEETING FOR 123 PATIENT/FAMILY MEMBERS, WITH PARTIAL FINANCIAL ASSISTANCE PROVIDED TO 57 INDIVIDUALS FOR TRAVEL. 200 HOURS OF STAFF TIME SPENT MEETING VIRTUALLY WITH PATIENTS/CAREGIVERS. HIRED A PART-TIME RESEARCH DIRECTOR TO SUPPORT THE PHARMACEUTICAL AND BIOTECH PIPELINE. FACILITATED 974 PATIENT VOLUNTEER HOURS AND 114 CLINICIAN VOLUNTEER HOURS. PARTNERED WITH ENYO PHARMACEUTICALS TO PROVIDE PATIENT INSIGHTS INTO CLINICAL TRIAL DESIGN AND TO SHARE INFORMATION ABOUT THE PHASE-2 ALPESTRIA-1 STUDY, WHICH FULLY ENROLLED AHEAD OF SCHEDULE.
    Expenses $916,993 · grants $324,631

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

Tax yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026Not on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
20-8237159
Tax-exempt status
501(c)(3): Charitable, religious, educational or scientific organization
Foundation status
Publicly supported organization (170(b)(1)(A)(vi))
Donations deductible (Pub 78)
Public charity, 50% deduction limit
Exempt since
2007
Accounting year ends
December
Files
Form 990 or 990-EZ
Category (NTEE)
Health care (E86)
Assets (IRS master file)
$2,817,931
Income (IRS master file)
$1,402,656

Filing history

FormYear endedRevenueExpensesAssetsReturn
990December 2024$1,194,735$1,003,948$2,817,931XML
990December 2023$1,016,405$612,534$2,669,586XML
990December 2022$990,673$499,455$2,277,966IRS
990December 2021–––IRS
990December 2020–––IRS
990December 2018–––IRS

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 20-8237159).

Questions about ALPORT SYNDROME FOUNDATION INC

What is the EIN of ALPORT SYNDROME FOUNDATION INC?
The employer identification number (EIN) of ALPORT SYNDROME FOUNDATION INC is 20-8237159.
Is ALPORT SYNDROME FOUNDATION INC tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2007.
Are donations to ALPORT SYNDROME FOUNDATION INC tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does ALPORT SYNDROME FOUNDATION INC file?
Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
When is the next return of ALPORT SYNDROME FOUNDATION INC due?
The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
When did ALPORT SYNDROME FOUNDATION INC last file with the IRS?
The latest return in the IRS public files is the 990 for the year ended December 2024.
Who is the principal officer of ALPORT SYNDROME FOUNDATION INC?
The 990 for the year ended December 31, 2024 names DANIEL KILPATRICK.
Who are the officers and directors of ALPORT SYNDROME FOUNDATION INC?
The 990 for the year ended December 31, 2024 lists 10 people; 1 received compensation from the organization, the highest $105,000 (LISA BONEBRAKE, EXECUTIVE DIRECTOR).
How much revenue does ALPORT SYNDROME FOUNDATION INC have?
On its 990 for the year ended December 31, 2024 it reported revenue of $1,194,735, expenses of $1,003,948 and total assets of $2,817,931 at year end.

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