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CHARITY REVIEW
Issued: November 2023 Expires: November 2025

Foundation for Ichthyosis and Related Skin Types

Standards Not Met
Standards Not Met
6 7 14 16
(800) 545-3286
Post Office Box 1067
Lansdale, PA, 19446
https://firstskinfoundation.org
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Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Foundation for Ichthyosis and Related Skin Types does not meet the following 4 Standards for Charity Accountability:

Standard 6 (Board Policy on Effectiveness)
Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

FIRST does not meet this Standard because:

  • The board of directors does not have a written policy stating that, at least every two years, an appraisal be done assessing the organization’s performance and effectiveness and determining future actions required to achieve its mission.

Standard 7 (Board Approval of Written Report on Effectiveness)
Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.

FIRST does not meet this Standard because:

  • The organization has not completed an effectiveness assessment in the last two years.

Standard 14 (Budget)
Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.

FIRST does not meet this Standard because, when the organization provided 2023 budget information, it indicated that the budget:

  • Did not identify total projected program service expenses, broken down by major program category (advocacy, conference/PSF, education/programs, and research).
  • Did not identify total projected fundraising expenses.
  • Did not identify total projected administrative expenses.

Standard 16 (Annual Report)
Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.

FIRST does not meet this Standard because the 2021-22 annual report did not include:

  • Total income matching the organization's audited financial statements for the year ended September 30, 2022.
  • Total end of year net assets.

The BBB Wise Giving Alliance requested but did not receive complete information from the organization and is unable to verify the organization's compliance with the following Standard(s) for Charity Accountability: 15

Foundation for Ichthyosis and Related Skin Types meets the remaining 15 Standards for Charity Accountability.

Stated Purpose:
"to improve lives and seek cures for those affected by ichthyosis and related skin types."

Year, State Incorporated:
1981, PA

Foundation for Ichthyosis and Related Skin Types (FIRST) aims to educate, inspire and connect families and individuals affected by ichthyosis and related skin types. The organization hosts patient support forums and also provides information to its members and the general public through its website, social media channels, conferences, newsletters, group discussions and staff. FIRST's information includes the latest in research, diagnosis and management of ichthyosis and related skin types, and support to those affected with these genetic conditions and those that care for them. FIRST also funds academic research around the world. In 2022, FIRST reports that its national conference had 373 participants which included 63 families with affected children, 57 affected adults, and 29 medical professionals and researchers.

For the year ended September 30, 2022, Foundation for Ichthyosis and Related Skin Types's program expenses were:

Conference/PSF $180,733
Research $27,807
Education/programs $410,120
Advocacy $76,460
Total Program Expenses $695,120

Chief Executive
Christopher Boynton, Chief Executive Officer

Compensation*
$170,719

Chair of the Board
Beth Hampshire

Chair's Profession / Business Affiliation
Deputy Controller, City of Fishers

Board Size
15

Paid Staff Size
3

*2021 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Internet, Radio, Special events

Fundraising costs were 14% of related contributions. (Related contributions, which totaled $619,447, are donations received as a result of fundraising activities.)

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on Foundation for Ichthyosis and Related Skin Types's audited financial statements for the year ended September 30, 2022.

Source of Funds
Investment loss $-387,094
Contributions $619,447
Total Income $232,353

Programs: 78% Fundraising: 9% Administrative: 13%

Total Income $232,353
Total expenses: $891,681
  Program expenses $695,120
  Fundraising expenses $83,924
  Administrative expenses $112,637
  Other expenses $0
Income in Excess of Expenses $-659,328
Beginning Net Assets $2,585,659
Other Changes In Net Assets $0
Ending Net Assets $1,926,331
Total Liabilities $32,271
Total Assets $1,958,602

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

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Report completed by:
BBB Wise Giving Alliance