Date: 08/14/2020

My first twelve weeks here at FIRST as your CEO have flown by with many phone calls, virtual meetings and much reading.  Under normal circumstances we would be coming off another successful conference where I would have met many of you and experienced the FIRST “family” first-hand.  Unfortunately, like many of you in your work, Zoom has had to replace face-to-face meetings and gatherings for the staff team. 

Fortunately, things are starting to calm down in the Northeast and I am beginning to meet volunteers and supporters in person.  I look forward to meeting you and hearing your stories about living with ichthyosis and how FIRST has played a role in helping you and your family.  The one constant in my conversations with members is the importance of the connections made through FIRST and the opportunity to meet and talk to others with similar experiences.

I am very excited to work with the FIRST volunteer leadership, staff and the Medical and Scientific Advisory Board to advance the mission of this great organization.  Although we were unable to hold the conference in June, the staff team put together an ambitious agenda of FIRST Connects and FIRST To Know Zoom and Facebook Live events in an attempt to replace some of the programming scheduled for Providence.  A very active Ichthyosis Awareness Month in May provided numerous opportunities to engage and to support the organization financially.

Along with the pandemic, major social issues have roiled our country.  FIRST has confronted some of our own shortcomings and is making needed changes.   Some of our efforts in these early weeks have been towards creating a more “welcoming” environment.  We strive to create a culture where people from under-represented communities share equally in all the organization has to offer.  The Board Development Committee is actively working to ensure our volunteer committees and leadership team represent our membership and the ichthyosis community at large.  We are also working to quickly onboard new members into the organization, so they also see the value of the information, connections and programs early on.  We are such a small community, there is no excuse for anyone falling through the cracks.

In the months ahead, we will be equally ambitious.  As I actively become more familiar with our internal operations, programming offerings, research program and fundraising I will strive to increase efficiency, effectiveness and member value.  Much of this is already underway.

We are creating policies and tools to create meaningful partnerships more easily with the biotech and the pharmaceutical industry.  FIRST supports research efforts in academic medical centers and for-profit corporations.  We are experiencing increased interest from pharmaceutical companies to connect with our membership as they prepare for clinical trials in the next few months.  There will be increased opportunities for you to get involved, as well.

The staff team and volunteer leadership are planning for the next several years.  What do we want FIRST to look like four years from now?  How can we bring more affected individuals and families under the tent and once here, how do we provide maximum value to them? How can we, with limited resources, help to accelerate research? Fundraising in a pandemic is challenging, how will FIRST sustain itself in coming years?  These are critical questions we will be assessing in the coming months.

Many of you reached out with warm welcomes when my hire was first announced.  Let’s keep the lines of communication open.  Please reach out to me with your ideas, comments and concerns.  FIRST is a volunteer organization.  Your input and involvement, your time and financial support are critical to our ability to deliver on our mission To improve lives and seek cures for those affected by ichthyosis and related skin types.

I am excited about the future!  There are challenges ahead, but I know together we will grow and evolve FIRST into an even more successful mission-driven organization while maintaining and improving the culture that truly sets us apart.

Thank you,


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