Foundation for Ichthyosis and Related Skin Types

Educate, Inspire, Connect

aka FIRST   |   Colmar, PA   |  www.firstskinfoundation.org

Mission

Our mission is to improve lives and seek cures for those affected by ichthyosis and related skin types.

Notes from the nonprofit

Core Values
Compassion - We are a caring organization recognizing the unique challenges faced by our community and will provide support with kindness and empathy.

Hope - While celebrating today's strengths and successes, we strive to convey to all individuals affected by ichthyosis that the future will be filled with friendship, support and a cure for ichthyosis.

Integrity - We will conduct ourselves in a trustworthy, ethical, and reliable manner in everything we do and say.

Responsiveness - We provide accurate and timely information about ichthyosis to meet the medical, social and educational needs of our community.

Ruling year info

1981

Executive Director

Mrs. Moureen Wenik

Main address

2616 N. Broad Street

Colmar, PA 18915 USA

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EIN

94-2738019

NTEE code info

Alliance/Advocacy Organizations (E01)

Fund Raising and/or Fund Distribution (W12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

FIRST Closed Facebook Groups

Participants exchange information in closed/private Facebook groups designated to their specific needs.

Population(s) Served

Members call into a specific topic and FIRST Staff members, along with an ichthyosis medical expert host a conference call/video call for members to freely discuss and ask questions.

Population(s) Served

Our grant program promotes and strengthens investigation into the causes, treatments, and potential cures for ichthyosis. With the adoption of this program, the Foundation manages the entire program through the national office. Guided by the Foundation's Research Committee, which is comprised of knowledgeable physicians, scientists, and Foundation leaders, the office administers the annual granting program.

Population(s) Served

We are an advocacy and support organization for those with ichthyosis from birth and throughout the lifetime of our members, via phone, email, in person meetings, conferences.

Population(s) Served

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

FIRST is a strong organization, enjoying loyalty and credibility among its stakeholders. Those same stakeholders also have high hopes that FIRST can make the most of the opportunities ahead. The release of promising new research and emerging therapies can bring attention to the burden and reality of living with ichthyosis and related skin types. The support of a strategically engaged patient advocacy group can bring real promise to patients who have spent decades with very little advancement in care. We will enhance our global leadership in connecting those affected by ichthyosis through increasing our capabilities in outreach, and striving to bring the power of genetic research to our membership.

The first directive's goal is to create greater value for our membership by focusing on enhancement and expansion of information. FIRST will continue to maintain its high level of service, information, and resources for the ichthyosis community, but expand its reach by converting major informational materials to Spanish and enriching the related skin type materials and resources. FIRST will also improve its dissemination of complicated medical information and research updates by publishing information in layman's terms, sharing relevant scientific articles and information from external media sources, and utilizing social media channels to reach new audiences.
The second directive introduces an innovative program, along with an expansive marketing campaign, that will impact research, member and professional engagement, and advocacy. Most importantly, this directive will take steps toward fulfilling the “no child born unknown" mantra, which has been a major driving initiative over the past several years. The focus of this program and adjoining marketing campaign is to facilitate genetic testing and create a registry of affected individuals.

With this expansion of information, services, and genetic testing, it will lead to an increase in members, donors, and medical professionals engaging with FIRST, thus building our operational database. Subsequently, a larger database of affected individuals will positively affect fundraising, events and awareness.

There are 9 strategies to accomplish this plan:
1)Stimulate and inform global ichthyosis research by using the Medical and Scientific Advisory Board to help guide and contribute to global research.
2)Improve dissemination of medical information:
Publish information in laymen's terms for our members.
3)Convert our resources to Spanish
4)Advocate for Insurance and Reimbursement Coverage:
Advocate for and achieve broader coverage for specific prescription and off label uses for existing prescriptions.
5)Promote the New Generation Program:
Develop a targeted educated marketing plan and inform existing medical professionals and members in our database.
Reach new families through "no family unknown" program.
Collaborate with international groups.
6)Achieve annual fundraising goal greater than $1,000,000.
Enhance strategies targeted towards four key groups of donors: major gifts, grassroots, general member donations (restricted and unrestricted), and corporations, foundations and institutions.
Update written and digital materials for communicating objectives to membership
- Emphasize how FIRST brings value to our members and opportunity for developing treatments and an eventual cure
- Review list of materials FIRST uses for fund raising purposes, from individual letters to donors to FIRST's case statement
7)Develop a database of genetically diagnosed individuals
Evaluate FIRST's specific role in enabling broader genetic diagnosis
- Determine how to become a research intermediary using the research committee to help determine the mandate & FIRST's specific role
- Consider being the conduit for bringing some of the disparate groups together
Determine key groups and roles
- Determine where the registry should be housed
- Determine who is responsible for record keeping, follow-up, data management
- Determine what data can be shared and with whom
8)Expand Infrastructure
Develop data insights on incidence
Develop organization to support growth in members and capabilities
Continue to develop FIRST's Board, committee structure, and financial management
Define spending policy in relationship to financial assets and 2015 – 2018 budget plan
9)Staffing Implications
The addition of new staff, redeployment of existing staff into new areas of focus

With this targeted set of goals for 2015 – 2018, FIRST renews its dedication to the basic principle of
increasing support, research, and greater service to its current and future members. This fundamental
guiding principle is the underlying basis for which this plan was created. The success of this four-year
plan will naturally lead to the development of new goals for the 2018 – 2020 strategic plan, ultimately
capitalizing on the genetic discoveries and larger registry of identified affected individuals. Perhaps
the next strategic plan can be entitled, “Be the Cure."

This new strategic plan just went into place in 2015 so we are at the very beginning of our accomplishments.

-We have converted all of our Resource Sheets into Spanish and have made them available on our website.
-Been issuing medical information, in layman's terms in a more frequent manner
-Adding related skin type information
-Added staff, reallocated the work structure
-Many member/donor visits have taken place
-Added more medical professionals to our database so that we can communicate with them in terms of the new generation.

Financials

Foundation for Ichthyosis and Related Skin Types
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Foundation for Ichthyosis and Related Skin Types

Board of directors
as of 11/4/2019
SOURCE: Self-reported by organization
Board chair

Jeff Hoerle

Stone Run Capital

Term: 2016 - 2019

Denise Benedetto

Secretary

Keith Choate

Kimberly Cole

Gabriele Richard

Denise Gass

Mark Evans

2nd Vice President

Tracie Pretak

1st Vice President

Sean McTernan

Robert Silverman

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes