Alport Syndrome Foundation Inc
- Assets
- $1.8m
- Revenue
- $993.5k
- Investments
- $0.0
- Employees
- 2
- Location
- Scottsdale, AZ
- Founding
- 04/2007
- Data as of
- 12/2021
- 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 12/2021, 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 12/2021, Alport Syndrome Foundation Inc generated $993.5k in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 20.3% each year . All expenses for the organization totaled $478.0k during the year ending 12/2021. While expenses have increased by 14.6% per year over the past 7 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
2021
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
STRENGTHENED AND EXPANDED PATIENT RESOURCES 1 ADDED A THIRD STAFF MEMBER, A PATIENT ENGAGEMENT COORDINATOR, TO ADDRESS THE NEEDS OF OUR GROWING PATIENT COMMUNITY. 2 ESTABLISHED AN EMERGING LEADERSHIP COUNCIL OF VOLUNTEERS TO ADDRESS THE UNMET NEEDS OF PATIENTS AGES 25-35. THE COUNCILS FIRST PROJECT WAS THE CREATION OF A DIGITAL, DOWNLOADABLE PATIENT GUIDE, WHICH IS NOW AVAILABLE IN ENGLISH AND SPANISH. 3 COMPLETED AN 18-MONTH-LONG PROJECT DOCUMENTING THE INSIGHTS AND EXPERIENCES OF 25 PEDIATRIC ALPORT PATIENTS, CULMINATING IN THE PEDIATRIC ALPORT INSIGHT REPORT. THE REPORT IS DESIGNED TO SUPPORT CLINICIANS AND FAMILIES AND ADDRESS BOTH THE PHYSICAL AND PSYCHOSOCIAL CHALLENGES OF GROWING UP WITH ALPORT SYNDROME. 4 CREATED AND DISTRIBUTED, ANNIE HAS ALPORT SYNDROME, AN EDUCATIONAL CHILDRENS COLORING BOOK TO HELP FAMILIES TALK ABOUT THIS RARE DISEASE WITH THEIR CHILDREN. 5 IMPLEMENTED A NEW WAY TO CONNECT PATIENTS THROUGH ALPORT DIRECT CONNECT VIRTUAL MEETINGS FOR SUBGROUPS OF PATIENTS AGES 18-35, 35-50, 50, AS WELL AS POST-TRANSPLANT-FOCUSED MEETINGS.
ADVANCED CRITICAL RESEARCH PROVIDED TWO VALUABLE RESEARCH GRANTS 1 PROOF-OF-CONCEPT GENE THERAPY DR. JEFF MINER, WASHINGTON UNIVERSITY IN ST. LOUIS AND HEARING LOSS DR. FELIPE SANTOS, MASSACHUSETTS EYE AND EAR INSTITUTE. 2 ESTABLISHED A SCIENTIFIC ADVISORY RESEARCH NETWORK COMPRISED OF 8 INTERNATIONAL EXPERTS IN ALPORT SYDROME WORKING COLLABORATIVELY TO STRATEGICALLY GUIDE ASF ON ACHIEVING ITS RESEARCH INVESTMENT OBJECTIVES. 3 PARTNERED WITH THE NATIONAL KIDNEY FOUNDATION TO DEVELOP THE NKF PATIENT NETWORK-ALPORT SYNDROME, A NEW REGISTRY FOCUSED ON CAPTURING CRITICAL NATURAL HISTORY DATA ON ALPORT PATIENTS, INCLUDING UNDERSTUDIED ASPECTS OF OUR RARE DISEASE TO LAUNCH EARLY 2022. 4 IMPLEMENTED A YEAR-LONG DIAGNOSIS STORIES PATIENT SURVEY TO BETTER UNDERSTAND THE PREVALENCE OF MISDIAGNOSIS AND TO COLLECT DATA POINTS FOR GAINING AN ACCURATE DIAGNOSIS, WITH 350 RESPONSES AS OF DECEMBER 2021. THE FIRST-ROUND REPORT WAS RELEASED MID-YEAR, ALONG WITH A VIDEO COMPANION PIECE FOCUSED ON THE EXPERIENCES OF FEMALE PATIENTS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Andrew Kronenberg Chair | OfficerTrustee | 6 | $0 |
Ryan Linder Secretary | OfficerTrustee | 2 | $0 |
Martin Dunleavy Treasurer | OfficerTrustee | 5 | $0 |
Sharon Lagas Co-Founder Past Chair | OfficerTrustee | 4 | $0 |
Lisa Bonebrake Executive Director | Officer | 40 | $0 |
Andre Weinstock Director | Trustee | 8 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $5,826 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $987,653 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $993,479 |
| Total Program Service Revenue | $0 |
| Investment income | $47 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $993,526 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $158,000 |
| Grants and other assistance to domestic individuals. | $5,500 |
| 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 | $78,939 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $60 |
| Payroll taxes | $6,259 |
| Fees for services: Management | $90,343 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $22,100 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $19,729 |
| Advertising and promotion | $7,099 |
| Office expenses | $21,523 |
| Information technology | $32,785 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $22,327 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $9,096 |
| Insurance | $4,260 |
| All other expenses | $0 |
| Total functional expenses | $478,020 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,444,390 |
| Savings and temporary cash investments | $243,568 |
| Pledges and grants receivable | $21,146 |
| Accounts receivable, net | $1,530 |
| 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 | $3,490 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $48,514 |
| Other assets | $0 |
| Total assets | $1,762,638 |
| Accounts payable and accrued expenses | $17,916 |
| Grants payable | $0 |
| 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 | $17,916 |
| Net assets without donor restrictions | $1,443,264 |
| Net assets with donor restrictions | $301,458 |
| 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 | $1,762,638 |
Grants Awarded
Over the last fiscal year, Alport Syndrome Foundation Inc has awarded $158,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
Saint Louis, MO PURPOSE: Research genetic therapy A.S. | $132,000 |
MASSACHUSETTS EYE & EAR INSTITUTE PURPOSE: Research cause of hearing loss A.S. | $26,000 |
Grants Recieved
Over the last fiscal year, we have identified 6 grants that Alport Syndrome Foundation Inc has recieved totaling $42,869.
| Awarding Organization | Amount |
|---|---|
Network For Good Inc Washington, DC PURPOSE: UNRESTRICTED | $22,309 |
Deck Foundation Bethesda, MD PURPOSE: CHARITABLE | $10,000 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $6,532 |
The Marcia And Ned Kaplin Foundation West Conshohocken, PA PURPOSE: FOR GENERAL SUPPORT OF CHARITABLE ACTIVITIES | $2,000 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $1,728 |
Windham Foundation Grafton, VT PURPOSE: SUPPORT FOR RESEARCH | $300 |
Endowment Analysis
| Beg. Balance | $129,204 |
| Net Contributions | $421,146 |
| Other Expense | $18,324 |
| Grants | $230,568 |
| Ending Balance | $301,458 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Semper Fi & Americas Fund Oceanside, CA | $37,365,164 | $52,627,529 |
Help Hospitalized Veterans Winchester, CA | $5,249,156 | $13,775,551 |
Ronald Mcdonald House Charities Of Southern California Los Angeles, CA | $114,215,026 | $22,501,510 |
Aids Services Foundation Orange County Irvine, CA | $3,937,446 | $10,804,360 |
Ronald Mcdonald House Charities-Bay Area Palo Alto, CA | $100,940,678 | $7,132,244 |
Make A Wish Foundation Of Arizona Inc Scottsdale, AZ | $12,914,940 | $7,684,963 |
Friends Of Children With Special Needs Fremont, CA | $25,367,213 | $10,631,161 |
Ronald Mcdonald House Charities Of San Diego Inc San Diego, CA | $40,995,448 | $7,714,085 |
Family House Inc San Francisco, CA | $9,247,596 | $8,472,433 |
Ronald Mcdonald House Charities Of The Intermountain Area Inc Salt Lake City, UT | $26,632,683 | $9,199,334 |
Southern Regional Resource Center San Diego, CA | $2,161,254 | $4,910,895 |
Make-A-Wish Northeastern & Central California And Northern Nevada Sacramento, CA | $9,635,263 | $6,223,674 |