Reflections on the Year: 2016

Michelle Davis Looks Back on 2016


Ten months ago, I was given the opportunity to join this incredible FOP community as the staff leader of its patient organization. Thank you for being so welcoming and for so graciously sharing your stories and experiences with FOP and the organization. I know sometimes I ask a lot of questions, but it’s only because I want to make sure we get it right — for individuals living with FOP, for families, for researchers and drug developers, and for clinicians. 

In my first year, some of my experiences have included: 

  • Speaking with families by phone and in-person where we had special opportunities to share with one another
  • Attending three family gatherings – FOP Italia’s 10th Annual Meeting, FOP Friends® UK Conference & Family Gathering and the Midwest Family Gathering. What incredible, patient-focused meetings organized by volunteer leaders!
  • Witnessing the power of community support at family fundraising events, especially at the two events I was able to attend in person — FOPAshleysCure Charitable Event and ZipperQ5. I’m looking to attend more fundraising events in 2017!
  • Partnering with our leadership team, including the Research Committee, to offer the IFOPA’s 2nd Drug Development Forum attended by academic and pharmaceutical researchers from around the world
  • Working closely with the Board of Directors and Strategic Planning Committee

I’m especially grateful for a trip that Lori and Carli Henrotay made to Kansas City when I was interviewing for the job. I was interested in serving the IFOPA after reviewing the website and meeting with the Search Committee, but after my meeting with Carli and Lori, the IFOPA had my heart. 

I’m also grateful for the lunch that Jeannie Peeper shared with me my first week on the job. After spending time with Jeannie, I could easily see how her genuine care for people and her vision and commitment had formed this amazing organization.

One of my most cherished visits was in March when Dr. Fred Kaplan spent time with me — until the wee hours of the morning after the FOPAshleysCure Event — sharing his experiences, perspective and passion. 

One of the challenges of an international organization is finding ways to make the worldwide community feel connected no matter the distance in miles. I’m grateful for the manner in which the leaders of the FOP national organizations (also known as The International President’s Council) have welcomed me and I’m encouraged by their desire to work with the IFOPA more closely in 2017. 

What’s been my greatest takeaway? It’s something that I’ve witnessed since my first interview with the search committee and that Marie Hallbert Fahlberg of Sweden encapsulated at a recent meeting. She shared a slogan previously used by the IFOPA … 

F.O.P. – Focus on Possibilities

That statement sums up my amazement and passion for the FOP community.

  • FOP individuals who face serious physical challenges don’t stay stuck in what they can’t do, but look for what is possible.
  • FOP families focus on what their awareness and fundraising activities can make possible for their loved ones and all of those living with FOP and have raised millions of dollars over the years.
  • FOP researchers have found the FOP gene and continue to look for many possible answers to what causes FOP to progress and finding ways to stop it.
  • FOP clinicians — doctors, anesthesiologists, dentists and therapists — selflessly serve FOP individuals and their families in any way possible.
  • Pharmaceutical companies who aren’t dissuaded by a small patient population forge ahead with research and drug development focused on the possibility of bringing not just one, but multiple treatments to the community.

As you’ll read in this edition of FOP Connection, there are exciting opportunities before the IFOPA this coming year. We are committed as an organization to getting it right and doing more for the FOP community. I look forward to focusing on possibilities with each of you! Happy Holidays! 


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