Changing World, Changing Ways…

FIRST’s Mission Statement: To improve lives and seek cures for those affected by ichthyosis and related skin types

“Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.” –Margaret Mead

So, what did we accomplish in 2015?  Lots! Many of our accomplishments were featured in our publications, website, and social media posts. However, there is one significant highlight that I’d like to expand upon, as I believe this milestone may be the most significant of the year – we have refined our approach on how we communicate and serve our members.

As you know, we have been supporting our mission and connecting our community for over 35 years. And each year, our community has grown, flourished and brought us one step closer to where we stand today – as the global leaders in ichthyosis advocacy. In 2015, we not only continued to embrace and serve the needs and requests of our members, but we’ve taken a deeper look at each individual’s personal connection with FIRST. The insights we’ve collected through surveys, member enrollment, event participation, donations and specific relationships, has helped us to better understand our membership on a more personal level. We’ve drawn new conclusions about our support channels and recognize emerging data, like the fact that FIRST’s largest group of supporters, is also our patients’ most vital support system – their family.

Through a pointed approach to data analysis, we’ve deepened our knowledge of who our members are, and what they precisely need from FIRST. For instance, we are learning that a family’s first contact with FIRST is most often through an extended family member, or that our medical professional members have the longest retention rate of active involvement in FIRST. All of this information is leading us to a path of more relevant programs and communications, expansion of our potential for patient advocacy, and enhanced service to our entire community throughout their lives. Our new approach is a true result of a changing world. We are reformulating how and to whom we communicate, reaching targeted audiences with messages that are relevant to their own personal connection to FIRST.

A key player in this new communications effort is a long-time member of our staff, Lisa Breuning. Lisa is a familiar face to many of our members, as she has been a dedicated member of our team for nearly nine years. In addition to her analytical eye and technical savvy, over the years, Lisa has gained a keen and comprehensive understanding of our membership base and the technology to manage their relationships. Last year, Lisa’s role shifted from Communications Coordinator to Director of Member Relations, which has proved to be an invaluable transition for our members and for FIRST.

“My role as Director of Member Relations is completely different than my role as Communications Coordinator. I am a more linear thinker, so this is a good fit for me.  My goal for the database is to maximize all of the functionality that is available and better utilize the information that we collect. If our information is up-to-date, consistent, and comprehensive, then we can better advocate on behalf of our members. Streamlining some of the day-to-day tasks has also been a focus, enabling the staff to get the information that they need as expediently as possible.”

- Lisa Breuning

Conversations and feedback from our members are an integral part of our success. On behalf of our staff, we look forward to connecting on a greater level with as many of you as possible, and learning more and better ways to serve this amazing community.

All the best,

Jean Pickford

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