| Grantee | Grant description | Grant year | Amount |
|---|---|---|---|
| Team Telomere | Health Equity Grant | 2022-12 | $15,000 |
| contd Advocacy and Resource Ne | Health Equity Grant | 2022-12 | $15,000 |
| Bleeding Disorders Alliance Illinois | Meet-Ups Grants | 2022-12 | $15,000 |
| ...and 16 more grants made | |||
| Grantmaker | Grantmaker tax period | Description | Amount |
|---|---|---|---|
| Silicon Valley Community Foundation (SVCF) | 2022-12 | Health | $200,000 |
| The Alexion Charitable Foundation | 2023-12 | Grant Will Support the Project Titled Rare Mental Health Impact Grants Program Which Provides An Opportunity for Foundation Leaders To Apply for Grants To Assist in Creating Programs, Educational Tools/materials, and Support Networks To Address Unmet Mental Health and Social Support Needs of Their Community. the Goal of the Impact Grants Program Is To Equip Patient Communities To Expand Availability and Effectiveness of Tools and Capabilities That Address Critical Mental Health Needs. A Secondary Goal Is To Utilize, Promote and Make Available the Outputs From the Grant-Funded Projects To the Larger Rare Community. | $165,000 |
| Project 8P Foundation | 2022-12 | Data Collection & Biorepository | $100,000 |
| ...and 5 more grants received | |||
| Name | Title | Compensation | Date of data |
|---|---|---|---|
| Charlene Son Rigby | Chief Executive Officer | 2024-08-06 | |
| Simon Frost | Chief Executive Officer , Tiber Capital Group | 2024-08-06 | |
| Ram Lyer | Chief Data Officer | 2024-04-19 | |
| Pam Ferris | Vice President Development and Marketing | $231,888 | 2021-12-31 |
| Christain Rubio | Vice President Strategic Advancement | $199,583 | 2021-12-31 |
| ...and 40 more key personnel | |||
| Revenues | FYE 12/2022 |
|---|---|
| Total grants, contributions, etc. | $3,865,176 |
| Program services | $1,690,520 |
| Investment income and dividends | $1,597 |
| Tax-exempt bond proceeds | $0 |
| Royalty revenue | $0 |
| Net rental income | $0 |
| Net gain from sale of non-inventory assets | $142 |
| Net income from fundraising events | $0 |
| Net income from gaming activities | $0 |
| Net income from sales of inventory | $0 |
| Miscellaneous revenues | $0 |
| Total revenues | $5,557,435 |
| Fiscal year ending | Date received by IRS | Form | PDF link |
|---|---|---|---|
| 2022-12 | 2023-11-14 | 990 | View PDF |
| 2021-12 | 2022-11-10 | 990 | View PDF |
| 2020-12 | 2021-11-15 | 990 | View PDF |
| 2019-12 | 2021-03-01 | 990 | View PDF |
| 2018-12 | 2020-02-10 | 990 | View PDF |
| ...and 8 more Form 990s | |||
| Organization | Type | Location | Revenue |
|---|---|---|---|
| Foundation for Sarcoidosis Research (FSR) | 501(c)(3) | Chicago, IL | $1,673,599 |
| Parent Project Muscular Dystrophy (PPMD) | 501(c)(3) | Washington, DC | $10,753,014 |
| Association for Frontotemporal Degeneration (AFTD) | 501(c)(3) | King of Prussia, PA | $8,537,416 |
| Children's Tumor Foundation | 501(c)(3) | New York, NY | $16,990,325 |
| Cerebral Palsy Foundation (CPF) | 501(c)(3) | New York, NY | $2,151,754 |
| Cerebral Palsy Alliance Research Foundation | 501(c)(3) | New York, NY | $2,402,103 |
| Emily's Entourage | 501(c)(3) | Ardmore, PA | $2,799,957 |
| MiracleFeet | 501(c)(3) | Chapel Hill, NC | $14,252,327 |
| Osteogenesis Imperfecta Foundation | 501(c)(3) | Gaithersburg, MD | $2,214,512 |
| International FOP Association | 501(c)(3) | North Kansas City, MO | $3,050,181 |
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