Growing our ability to deliver on the IFOPA's mission

Since the 2006 discovery of the FOP gene, there has been remarkable progress in the work to develop treatments—and ultimately find a cure—for FOP. In order for the IFOPA to be as effective as possible in helping to advance research and drug development, while serving the needs of individuals and families, different skills and resources will be required of our organization.

During our strategic planning process, we evaluated all areas of the IFOPA’s work and infrastructure. The changes we’re sharing with you today allow us to move from administration to mission delivery … and reallocate resources to fund the mission-focused programs and services we offer.

Jeannie Peeper, Founder and President Emeritus, who retired from her work with the IFOPA in 2013, shares her perspective on the changes coming to the IFOPA. “I have faith in the IFOPA’s Board of Directors, along with the Executive Director, to lead the organization in the manner that will best equip it to deliver on the IFOPA’s mission of funding research to develop treatments and find a cure, as well as providing education and support for individuals living with FOP and their families.”

 Staffing Up to Serve You 

The following new positions will be filled in 2017 and will be managed by Michelle Davis, IFOPA Executive Director, who began working for the organization in February 2016. 

A Director of Research Development & Partnerships will be hired to advance our efforts to enable FOP research and therapeutic development. This work includes projects related to funding The Center for Research in FOP and Related Disorders at the University of Pennsylvania and the Competitive Research Grants Program, managing industry relationships according to the IFOPA’s stated guidelines for pharmaceutical engagement, and organizing the Drug Development Forum, to name a few. 

Betsy Bogard has been consulting with the IFOPA on our research initiatives since 2014. We are grateful to Betsy for her leadership and are pleased to have her continued involvement as Chair of the Research Committee in 2017, a return to her volunteer position. 

In mid-2017, we’ll hire a Family Services Director to manage and develop patient education and support programs, including, as an example, web-based resources, videos and webinars, Family Gatherings, mentoring programs, and the Quality of L.I.F.E. Awards. 

An Administrative Coordinator will be hired to manage calls and correspondence, including social media. 

In addition, the IFOPA will continue to contract with consultants to manage two key functions: 

Neal Mantick will continue to serve as the FOP Connection Registry Study Manager, a critical role as the IFOPA prepares to launch the FOP Connection Patient Registry in six new languages and build the medical portal. 

Sara Brown, Fundraising Events Manager, will continue in her role of assisting families and others committed to raising funds for the IFOPA. She will also be building new national fundraising programs to grow our financial resources, which will allow us to do more for the FOP community.

Going Virtual 

The IFOPA has limited resources and must constantly re-evaluate to best advance our mission and serve the individuals and families who rely on us for support. Resources invested in rent will be reallocated to support mission delivery and the office in Florida will close on January 31, 2017. The employees and consultants working for the IFOPA will each work out of their homes around the country. The website will list, along with their contact information, the time zone they live in. 

You will still be able to call (816) 809 2772 and be routed to the staff person you’re seeking. We’ll soon list, on our redesigned website, mailing addresses for general communication and donations. 

These new changes also give us the resources and increased bandwidth to improve our outreach and engagement with the FOP community: 

• The FOP Connection e-newsletter now comes out every month 

• Our new IFOPA website will be launched in the next month 

• We have an increased presence on Facebook, Twitter and LinkedIn 

• A new Pinterest account is in the works and will be launched soon 

Thank You to our Florida Staff 

In accord with the hiring of new positions to grow our mission delivery, the current staff—Denise Vietti, Victoria Mandracken, and Sue Weidner—will leave the IFOPA on January 31, 2017. 

We are intensely grateful to the dedicated IFOPA staff who have brought us to this point in our organization. They sustained the office after Jeannie retired, were critical in the very special 25th Anniversary Gathering held in Florida in 2013, and never failed to work extra hours when needed. 

Denise, Victoria, and Sue, thank you from the bottom of our hearts. 

Thank you for your patience and input as we make this transition. We’re in the midst of great progress and advancement, and it’s our aim to continuously improve to serve you better. If you have questions or concerns, please reach out to Michelle at (816) 809-2772 or [email protected]; she lives in the Central time zone. 

Our entire team – the volunteer Board of Directors and committee members, staff and consultants – all share in the IFOPA’s vision “a cure for FOP, accessible worldwide.” We look forward to partnering with you toward that goal!

Paul Brinkman, Chair, IFOPA Board of Directors

Michelle Davis, Executive Director