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SERVE CHILDREN AND ADULTS WHO SUFFER FROM GENETIC AND OTHER COMPLEX MEDICAL DISORDERS BY PROVIDING COMPREHENSIVE MEDICAL, LABORATORY, AND CONSULTATIVE SERVICES, AND BY INCREASING AND DISSEMINATING KNOWLEDGE OF SCIENCE AND MEDICINE.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2023
Total Revenue
▼$10.6M
Program Spending
82%
of total expenses go to program services
Total Contributions
$8.2M
Total Expenses
▼$7.3M
Total Assets
$24M
Total Liabilities
▼$749.2K
Net Assets
$23.2M
Officer Compensation
→$1.2M
Other Salaries
$2.5M
Investment Income
$400.3K
Fundraising
▼$1.3M
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2023IRS e-File | $10.6M | $8.2M | $7.3M | $24M | $23.2M |
| 2022IRS e-File | $9.7M | $6.7M | $6M | $19.8M | $18.5M |
| 2021 | $8.2M | $5.7M | $4.4M | $13.5M | $13.1M |
| 2020 | $4.4M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
Financial data: IRS e-Filed Form 990 (Tax Year 2023)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Kevin Strauss Md | Medical Dir | 50 | $393.6K | $0 | $62K | $455.6K |
| Adam Heaps Ms Mba | Executive Di | 45 | $149.9K | $0 | $35.6K | $185.5K |
| Herman Bontrager | Chair | 3 | $0 | $0 | $0 | $0 |
| Leon Hoover | Vice Chair | 2 | $0 | $0 | $0 | $0 |
| Cindy Bo Mba | Secretary | 2 | $0 | $0 | $0 | $0 |
| Mark Martin | Treasurer | 2 | $0 | $0 | $0 | $0 |
Kevin Strauss Md
Medical Dir
$455.6K
Hrs/Wk
50
Compensation
$393.6K
Related Orgs
$0
Other
$62K
Adam Heaps Ms Mba
Executive Di
$185.5K
Hrs/Wk
45
Compensation
$149.9K
Related Orgs
$0
Other
$35.6K
Herman Bontrager
Chair
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Leon Hoover
Vice Chair
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Cindy Bo Mba
Secretary
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Mark Martin
Treasurer
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Vincent J Carson Md | Pediatric Ne | 45 | $245.7K | $0 | $52.6K | $298.3K |
| Laura Poskitt Do | Medical Dire | 45 | $216.3K | $0 | $41.6K | $257.9K |
| Erik Puffenberger Phd | Laboratory D | 45 | $206.3K | $0 |
Vincent J Carson Md
Pediatric Ne
$298.3K
Hrs/Wk
45
Compensation
$245.7K
Related Orgs
$0
Other
$52.6K
Laura Poskitt Do
Medical Dire
$257.9K
Hrs/Wk
45
Compensation
$216.3K
Related Orgs
$0
Other
$41.6K
Erik Puffenberger Phd
Laboratory D
$254.7K
Hrs/Wk
45
Compensation
$206.3K
Related Orgs
$0
Other
$48.3K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Elam Esh | Board Member | 1 | $0 | $0 | $0 | $0 |
| Glen Zimmerman | Board Member | 1 | $0 | $0 | $0 | $0 |
| Jacob Petersheim | Board Member | 1 | $0 | $0 | $0 | $0 |
| Jan Bergen | Board Member | 1 | $0 | $0 | $0 | $0 |
| Jonathan Salvin Md | Board Member | 1 | $0 | $0 | $0 | $0 |
| Leonard Hurst | Board Member |
Elam Esh
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Glen Zimmerman
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Jacob Petersheim
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
| $1.4M |
| $4M |
| $8.8M |
| $8.6M |
| 2019 | $5.1M | $1.4M | $3.5M | $8.3M | $8M |
| 2018 | $3.7M | $693.2K | $3.1M | $6.7M | $6.4M |
| 2017 | $2.9M | $567.5K | $2.6M | $6M | $5.8M |
| 2016 | $3.2M | $1.2M | $2.9M | $5.4M | $5.2M |
| 2015 | $3.2M | $1.1M | $2.8M | $5M | $4.8M |
| 2014 | $2.5M | $857.2K | $2.4M | $4.8M | $4.6M |
| 2013 | $2.4M | $1.3M | $2M | $4.5M | $4.4M |
| 2012 | $2.5M | $1.5M | $1.9M | $3.8M | $3.7M |
| 2011 | $1.8M | $810.6K | $1.9M | $3M | $2.8M |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| $48.3K |
| $254.7K |
| Grace Loudon Meier Md | Family Medic | 45 | $204.1K | $0 | $42.1K | $246.2K |
| Karlla W Brigatti Ms Cgc | Research Ops | 45 | $146.3K | $0 | $16.1K | $162.4K |
| Donna L Robinson Msn Crnp | Nurse Practi | 45 | $124.8K | $0 | $23.1K | $148K |
| Angela M Sepela | Development | 45 | $104.6K | $0 | $9,389 | $114K |
Grace Loudon Meier Md
Family Medic
$246.2K
Hrs/Wk
45
Compensation
$204.1K
Related Orgs
$0
Other
$42.1K
Karlla W Brigatti Ms Cgc
Research Ops
$162.4K
Hrs/Wk
45
Compensation
$146.3K
Related Orgs
$0
Other
$16.1K
Donna L Robinson Msn Crnp
Nurse Practi
$148K
Hrs/Wk
45
Compensation
$124.8K
Related Orgs
$0
Other
$23.1K
Angela M Sepela
Development
$114K
Hrs/Wk
45
Compensation
$104.6K
Related Orgs
$0
Other
$9,389
| 1 |
| $0 |
| $0 |
| $0 |
| $0 |
| Stephen Tifft Md | Board Member | 1 | $0 | $0 | $0 | $0 |
Jan Bergen
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Jonathan Salvin Md
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Leonard Hurst
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Stephen Tifft Md
Board Member
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0