Alport Syndrome Foundation Inc

Organization Overview

Alport Syndrome Foundation Inc is located in Scottsdale, AZ. The organization was established in 2007. According to its NTEE Classification (E86) the organization is classified as: Patient & Family Support, under the broad grouping of Health Care and related organizations. As of 12/2023, Alport Syndrome Foundation Inc employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Alport Syndrome Foundation Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2023, Alport Syndrome Foundation Inc generated $1.0m in total revenue. This organization has experienced exceptional growth, as over the past 9 years, it has increased revenue by an average of 15.8% each year . All expenses for the organization totaled $612.5k during the year ending 12/2023. While expenses have increased by 14.3% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2023

Describe the Organization's Mission:

Part 3 - Line 1

TO IMPROVE THE LIVES OF THOSE AFFECTED BY ALPORT SYNDROME THROUGH EDUCATION, EMPOWERMENT, ADVOCACY, AND FUNDING RESEARCH. THE FOUNDATIONS VISION IS TO MAKE ALPORT SYNDROME A TREATABLE DISEASE AND FIND A CURE.

Describe the Organization's Program Activity:

Part 3 - Line 4a

HELD THE FIRST IN-PERSON PATIENT AND FAMILY MEETING SINCE 2019, ALPORT CONNECT SAN DIEGO IN OCTOBER 2023. IT WAS ALSO OUR LARGEST IN-PERSON EVENT TO DATE, HOSTING PATIENTS, FAMILY MEMBERS, AND MEDICAL EXPERTS FROM AROUND THE COUNTRY, WITH 175 IN ATTENDANCE. ASF BOARD, STAFF, AND VOLUNTEERS REPRESENTED THE NEEDS OF THE ALPORT COMMUNITY AT IN-PERSON EVENTS WITH KEY STAKEHOLDERS. WE PROVIDED INSIGHTS AND GUIDANCE FROM THE PATIENT PERSPECTIVE RELATED TO PEDIATRIC CLINICAL TRIALS AT A JULY MEETING ORGANIZED BY THE KIDNEY HEATH INITIATIVE, NEPHCURE, AND THE FDA. IN NOVEMBER, ASF EXHIBITED AT THE AMERICAN SOCIETY OF NEPHROLOGYS KIDNEY WEEK CONFERENCE IN PHILADELPHIA, PA, WHICH BROUGHT TOGETHER OVER 12,000 PARTICIPANTS IN THE NEPHROLOGY SPACE. RECEIVED THE LARGEST NUMBER OF APPLICATIONS TO DATE FROM A TREMENDOUS GROUP OF YOUNG ADULTS LIVING WITH ALPORT SYNDROME DURING THE 2023 PAUL SILVER ENRICHMENT AWARD CYCLE. DUE TO THEIR OUTSTANDING APPLICATIONS, SEVEN INDIVIDUALS WERE AWARDED FUNDS PROVIDED BY THE SILVER FAMILY, ASF, AND SEVERAL DONORS.


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Board, Officers & Key Employees

Name (title)Compensation
Andrew Kronenberg
Board Chair
$0
Ryan Linder
Secretary
$0
Martin Dunleavy
Treasurer
$0
Sharon Lagas
Co-Founder, Director Past Chair
$0
Andre Weinstock
Director Research Chair
$0
Amy Rhodes
Director Fb Moderator
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$953,036
Noncash contributions included in lines 1a–1f $19,191
Total Revenue from Contributions, Gifts, Grants & Similar$953,036
Total Program Service Revenue$0
Investment income $59,382
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $3,987
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $1,016,405

Grants Awarded

Over the last fiscal year, Alport Syndrome Foundation Inc has awarded $92,268 in support to 2 organizations.

Grant RecipientAmount

UNIVERSITY OF MICHIGAN

PURPOSE: Natural History Study in Alport Syndrome

$91,624

OTHERS UNDER REPORTING THRESHOLD

|

|

$644
View Grant Profile

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