Alport Syndrome Foundation Inc
Donations deductibleAlport Syndrome Foundation Inc's network
9 peoplei9 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (9). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.The board
9 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 9 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Andrew Kronenberg Chair | Board Chair | 2018 | 8 yrs |
| Sharon Lagas Chair | Co-Founder, Director Past Chair | 2018 | 8 yrs |
| Amy Rhodes | Director | 2023 | 3 yrs |
| Daniel Kilpatrick | Treasurer | 2024 | 2 yrs |
| December West | Director | 2024 | 2 yrs |
| Marty Dunleavy | Director | 2024 | 2 yrs |
| Phillip Kumnick | Director | 2018 | 8 yrs |
| Ryan Linder | Company secretary | 2018 | 8 yrs |
| Stephen Malach | Director | 2022 | 4 yrs |
Under 5 years5 to 6 years6 years or more
Officers and senior leadership
2 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| Gina Parziale | Executive Director to 7/2019 | since 2018 |
| Lisa Bonebrake | Executive Director | since 2019 |
Pay and hours
year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Lisa Bonebrake | Executive Director | 65 | $105k | ||
| Andrew Kronenberg | Board Chair | 10 | $0 | ||
| Ryan Linder | Secretary | 2.5 | $0 | ||
| Daniel Kilpatrick | Treasurer | 5 | $0 | ||
| Sharon Lagas | Co-Founder, Director Past Chair | 5 | $0 | ||
| Amy Rhodes | Director | 5 | $0 | ||
| December West | Director | 1 | $0 | ||
| Marty Dunleavy | Director | 1 | $0 | ||
| Phillip Kumnick | Director | 1 | $0 | ||
| Stephen Malach | Director | 1 | $0 |
Colorado roster
10 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20233029587). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.| Name | Title as filed |
|---|---|
| Stephen Malach | Board Member |
| Phillip Kumnick | Board Member |
| Janine Reed | Board Member |
| Andrew Kronenberg | Chair |
| Andre Weinstock | Board Member |
| Marty Dunleavy | |
| Ryan Linder | Secretary |
| Marty Dunleavy | Treasurer |
| Lisa Bonebrake | Executive Director |
| Sharon Lagas | Co-Founder and Past President |
About
- Legal name
- Alport Syndrome Foundation Inc
- EIN
- 208237159
- Address
- 1608 E Briarwood Ter, Phoenix, AZ, 85048-9414
- State
- Arizona
- 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. (as filed on the Form 990)
- Activity (NTEE)
- E86 Health care
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Health Care
- Size band
- 6 (IRS master file code)
- Formed
- 2007
- Principal officer
- Daniel Kilpatrick (as named on the Form 990)
- IRS ruling date
- 1 April 2007
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 7, latest 2024
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsAndrew Kronenberg
≥8years on the filingsSharon Lagas
≥8years on the filingsPhillip Kumnick
≥8years on the filingsRyan Linder
Latest return
year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.- Total assets
- $2.8m
- Total liabilities
- $17k
- Net assets or fund balances
- $2.8m
- Contributions and grants received
- $1.1m
- Program service revenue
- $0
- Grants and similar paid out
- $325k
- Employees
- 5
- Volunteers
- 95
Filed finances
1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.| Tax year | Total revenue | Total expenses | Surplus or deficit |
|---|---|---|---|
| 2024 | $1.2m | $1m | $191k |
As filed on the IRS Form 990. US dollars.
Grants paid
3 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| University of Michigan | Alport Syn ancillary natural history study | $171k |
| Univ of Washington at St Louis | School of Medicine Alport Study in mice | $133k |
| Others under threshold | Alport Syndrome research | $11k |
State registration
1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.Alport Syndrome Foundation, Inc. likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Colorado Secretary of State (CDOS), business entities (data.colorado.gov 4ykn-tg5h). Licence: public domain. Data last fetched 18 October 2026.
- State
- Colorado
- Entity type
- nonprofit corporation
- Status
- Good Standing
- Formed
- 20 May 2026
- Registered agent
- Colorado Registered Agents Inc (city and state not held)
This register does not publish officers or directors.