FIRST’s Annual Board Retreat took place from Friday, November 1 to Sunday, November 3 at the Philadelphia Airport Marriott.  The weekend kicked off with members meeting and reuniting at the hotel on Friday evening, followed by a spirited day of discussion, planning, and a careful review of FY 2013’s successes, challenges, and lessons learned.  

FIRST’s Board President, Mike Briggs, offered a warm welcome on Saturday morning, followed by introductions and the unique “Where do you stand?” icebreaker.  During this  energizing exercise, lead by Moe Wenik,  board members were asked to weigh-in on their feelings about the history, progress, and future of FIRST; needless to say this lead to some insightful discussion!

Denise Benedetto brought the board up to speed on the Membership Connectivity, Activism & Growth initiative and their progress to date, as well as future plans. Moe Wenik presented slides on the successes of the Patient Support Forums in 2013. Discussion focused on the value of the PSF to members, and some possible upcoming enhancements  for 2015, such as using live streaming videos to reach those who could not attend.

Rachel See shared an intriguing presentation on the history and evolution of FIRST’s marketing efforts. She also mentioned that FIRST hired their first fulltime Communications Director this year. Mo Neville then shared a comprehensive communications presentation, which included a review of the several strategies: current member engagement, public engagement, andsocial media,along withour tele-ichthyosis communications programand introduction to the use of video in our communications.

Following lunch, Chris Wassel and Dave Scholl presented FIRST’s plans to explore a major gifts campaign to solicit large donations to build a research endowment.  Dr. Leonard Milstone reviewed FIRST’s history of promoting and funding research. Leonard emphasized how important FIRST’s role has been in moving research along to where we are today (funding investigator fellowships, organizing scientific meetings,  recruiting patients at family conferences, etc.)

Following lunch, Dave Scholl, Terry Tormey, and Jennifer Hillman – board members who have all completed their term on the FIRST board, were all graciously thanked by Mike Briggs for their service to FIRST. A small token of the board’s appreciation were given to each of them. 

As a wrap up to Saturday, the board members traveled offsite for a social dinner at Marra’s Cucina Italiana on Passyunk Avenue; how could we let our out-of-town members not experience italian cuisine in the heart of South Philly!

On Sunday, the team met once again for a  morning session to discuss FIRST’s investment portfolio and plans for the future. This was followed by a formal Board of Directors meeting, where four new board members were officially elected for a three-year term;  Kim Cole, Greg Licalzi, Tracie Pretak, and Robert Silverman, MD. Welcome aboard!

An extremely productive retreat was enjoyed by all, and FIRST is looking forward to initiating many of the ideas discussed in the upcoming year.


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