Foundation for Ichthyosis and Related Skin Types

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.