Program areas at FIRST
First educates, inspires, and connects families and individuals affected by Ichthyosis and Related Skin Types. First hosts patient support forums and also provides critical information to its members and the general public through its website and calls to its knowledgeable staff. First maintains an active social media presence and facilitates group discussions. First provides accurate, non-biased information on the latest in research, diagnosis, and management of Ichthyosis and Related Skin Types, and critical support to those affected with these genetic conditions and those that care for them.
One of the cornerstones of First is its emphasis on research and its support of the yale Ichthyosis registry both financially and through its promotion accross its communication channels. Critical to improving the management of their condition, participation in the yale registry provides each affected individual a genetic diagnosis of their particular type of Ichthyosis or other Skin type. The registry is also vitally important to the research community and continues to be referenced in numerous studies and manuscripts. The registry also serves to provide research opportunities for training the next generation of physician scientists.
Grants made by FIRST
Grantee | Grant description | Grant year | Amount |
---|
Yale University | Research Grant | 2023-09 | $93,500 |
Who funds Foundation for Ichthyosis and Related Skin Types (FIRST)
Grants from foundations and other nonprofits
Personnel at FIRST
Name | Title | Compensation | Date of data |
---|
Christopher Boynton | Chief Executive Officer | $182,895 | 2024-11-25 |
Jason Thogmartin | Chief Financial Officer | $0 | 2024-11-25 |
Lisa Breuning | Director of Operations | | 2024-11-25 |
Denise Gass | Director of Development | $0 | 2024-11-25 |
Christine Wassel | Community Engagement Director | | 2024-11-25 |
...and 13 more key personnel |
Financials for FIRST
Revenues | FYE 09/2023 | FYE 09/2022 | % Change |
---|
Total grants, contributions, etc. | $676,431 | $619,447 | 9.2% |
Program services | $0 | $0 | - |
Investment income and dividends | $71,603 | $97,088 | -26.2% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $-13,088 | $-7,984 | -63.9% |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $734,946 | $708,551 | 3.7% |
Organizations like FIRST
Organization | Type | Location | Revenue |
---|
Beyond Celiac | 501(c)(3) | Ambler, PA | $3,093,277 |
National MPS Society | 501(c)(3) | Durham, NC | $2,296,659 |
National Pku Alliance | 501(c)(3) | New York, NY | $1,305,823 |
Solve Me CFS Initiative | 501(c)(3) | Glendale, CA | $2,037,881 |
International Dyslexia Association (IDA) | 501(c)(3) | Pikesville, MD | $2,207,902 |
Schizophrenia & Psychosis Acti | 501(c)(3) | Alexandria, VA | $1,546,410 |
The Diabetes Link | 501(c)(3) | Boston, MA | $1,771,042 |
National Center for Learning Disabilities | 501(c)(3) | Washington, DC | $1,255,350 |
contd Advocacy and Resource Ne | 501(c)(3) | Stanton, KY | $365,826 |
Fundacion Pediatrica de Diabetes | 501(c)(3) | San Juan, PR | $559,976 |
Data update history
November 25, 2024
Updated personnel
Identified 5 new personnel
August 18, 2024
Posted financials
Added Form 990 for fiscal year 2023
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchNational levelEndowed supportGala fundraisersTax deductible donationsAccepts online donations
General information
- Address
- PO Box 1067
- Lansdale, PA 19446
- Metro area
- Philadelphia-Camden-Wilmington, PA-NJ-DE-MD
- County
- Montgomery County, PA
- Website URL
- firstskinfoundation.org/Â
- Phone
- (215) 997-9400
- Facebook page
- FoundationforIchthyosisÂ
- Twitter profile
- @first_skinÂ
IRS details
- EIN
- 94-2738019
- Fiscal year end
- September
- Taxreturn type
- Form 990
- Year formed
- 1981
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G80: Specifically Named Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current
- FTB status revoked
- Not revoked
- AG Registration Number
- 042550
- FTB Entity ID
- 1013847
- AB 488 data last updated ("as-of") date
- 2024-12-31
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