Alport Syndrome Foundation Inc
- Assets
- $2.7m
- Revenue
- $1.0m
- Investments
- $0.0
- Employees
- 2
- Location
- Scottsdale, AZ
- Founding
- 04/2007
- Data as of
- 12/2023
- EIN
- 20-8237159
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.
Form
990
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) | Role | Hours | Compensation |
|---|---|---|---|
Andrew Kronenberg Board Chair | OfficerTrustee | 6 | $0 |
Ryan Linder Secretary | OfficerTrustee | 2 | $0 |
Martin Dunleavy Treasurer | OfficerTrustee | 6 | $0 |
Sharon Lagas Co-Founder, Director Past Chair | OfficerTrustee | 2 | $0 |
Andre Weinstock Director Research Chair | Trustee | 10 | $0 |
Amy Rhodes Director Fb Moderator | Trustee | 4 | $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 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $97,151 |
| Grants and other assistance to domestic individuals. | $14,000 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $141,115 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $10,858 |
| Fees for services: Management | $104,168 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $23,033 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $2,336 |
| Advertising and promotion | $6,325 |
| Office expenses | $32,098 |
| Information technology | $63,712 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $57,922 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $44,119 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $10,983 |
| Insurance | $4,714 |
| All other expenses | $0 |
| Total functional expenses | $612,534 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $601,572 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $20,032 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $29,487 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $1,888,171 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $130,324 |
| Other assets | $0 |
| Total assets | $2,669,586 |
| Accounts payable and accrued expenses | $17,167 |
| Grants payable | $14,000 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $31,167 |
| Net assets without donor restrictions | $1,935,485 |
| Net assets with donor restrictions | $702,934 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $2,669,586 |
Grants Awarded
Over the last fiscal year, Alport Syndrome Foundation Inc has awarded $92,268 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF MICHIGAN PURPOSE: Natural History Study in Alport Syndrome | $91,624 |
OTHERS UNDER REPORTING THRESHOLD | | | $644 |