Realizing Our Mission Despite Change

The year 2020 will be remembered as one that was unprecedented and full of change. Through it all, our talented staff , strong leaders and committed volunteers have proven they are adaptable and creative by fi nding new virtual ways to provide value and connections for our members. This issue will
highlight some of those, including our powerful In My Skin event featuring music and voices from the Black ichthyosis community.

In May, our new CEO joined the staff . Christopher Boynton brings decades of experience in nonprofi t management. We are excited to work with him to create strategy and vision for the future.

In September, Board President Jeff Hoerle stepped down. His leadership has left us on a positive trajectory with a strong financial position. We thank him for his dedication and service to FIRST. Jeff has trained and inspired our new Executive Committee:

  • Co-Chairs of the Board – Mark Evans and Tracie Pretak (parents of children)
  • 1st Vice Chair – Brian Stern (parent)
  • 2nd Vice Chair – Beth Hampshire (affected adult)
  • CFO – Sean McTernan (parent)
  • Secretary – Denise Benedetto (parent)

While we embrace change and improvements, we are committed to keeping the heart of FIRST in our mission.
In Shared Passion,


Mark Evans (pictured with daughter Abigail)    and  Tracie Pretak (pictured with daughter Bailey)
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