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International Fibrodysplasia Ossificans Progressiva Association (IFOPA): Perspective from a funder

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Funder Perspective: International Fibrodysplasia Ossificans Progressiva Association Danielle Kerkovich, PhD, Director of Research Development and Partnerships IFOPA logo and photo of Danielle.

Preface:  I recently had a conversation with Danielle Kerkovich, Director of Research Development and Partnerships at the International Fibrodysplasia Ossificans Progressiva Association. Danielle has a PhD in biomedical sciences and extensive experience working in the non-profit sector.

According to Danielle, “There are a lot of researchers attracted to working on this disease where there is a significant unmet need coupled with  a tangible light at the end of the tunnel because the mutation is known. Those with FOP express a percentage of mutant receptors while the rest are healthy. We know what the mutant receptor is up to and are seeing so many creative approaches to inhibiting it so we can tip the scales for someone with FOP back to health. This is a precipitous moment in FOP research. Remember – when you apply, it’s not just about good science, it’s about a proposal being a good fit for the funder’s mission.”

September 1, 2023 is this year’s Letter of Intent (LOI) deadline for the Accelerating Cures and Treatments for Fibrodysplasia Ossificans Progressiva Grant.

Tell us more about the history of the ACT (Accelerating Cures and Treatments) for FOP Grant Program from IFOPA.

The ACT for FOP Grant Program was launched in 2015 by friends and family of Sona Brinkman. Today, others who are passionate about curing FOP have joined them in funding the ACT for FOP Grant Program with lead gifts from: Joshua’s Future of Promises, FOP Australia, FOP Friends, FOP Italia, Canadian FOP Network, friends and family of Sona Brinkman, Terri Hendley, and donors to the IFOPA’s In Pursuit of a Cure Campaign. The reason for starting this program was to create a funding stream that would focus specifically on translating discoveries into treatment.

This year, we are expanding the call to include key areas of interest in basic science where more work is needed to reach the point of translation; areas such as the root cause of FOP-specific pain and understanding flare-ups, swellings that often precede bone.

We’d love to know more about your role at IFOPA. And what inspires and interests you the most in your work?

Traditionally, nonprofit medical research funders begin their journey with affected families surrounded by a dedicated healthcare community helping them to determine which submitted projects to fund. This is a wonderful approach, asking research experts what needs to be done and how but it’s only part of a successful research funding strategy. My position, and my reason for obtaining a PhD in Biomedical sciences is to look at the entire research landscape, identify knowledge gaps that are not being filled, go after those and to find ways to apply our growing body of knowledge to tangible solutions in partnership with academic institutions, clinical centers and pharmaceutical companies.

What would make a candidate and their research a good fit for this funding opportunity?

We are specifically looking for applicants who are able to bring a new science to FOP. For many years, our focus has been on preventing new bone growth. Today, there are 4 pharmaceutical companies testing drugs to prevent new bone in 5 Phase I-III trials. Therefore, we want to expand our focus to lesser studied aspects of the disease that also have far-reaching effects on one’s health such FOP-specific pain and dental disease.

I understand you initiated a Letter of Intent (LOI) stage for the first time this year. Can you tell us why this decision was made?

The IFOPA is making a concerted effort to reach out to investigators with key expertise and skill sets that address specific unmet needs in FOP. As new proposals and topics come in, we will use the LOIs to identify and ad hoc reviews to our scientific advisory board of FOP experts. We want to ensure that the final review panel represents the full complement of expertise needed for rigorous review. 

Is there something that typically sets the top applicants apart from the others when the board is reviewing applications?

When creative proposals come in that address unmet needs, review boards get really excited about their potential. Equally important are proposals that may not be so exciting in terms of new technologies or approach but truly fill a gap in data or our understanding of a difficult to fix problem. 

What advice would you offer to potential applicants?

One thing that surprises me in this role is that I almost never get any phone calls. If you really don’t know if your research is a fit – call me. This is a better question than emailing to ask how many proposals we plan to fund so you can gauge the odds of receiving funding. Ask yourself, is my research aligned with the research focus? 

As for the “odds,” we don’t simply take the top scorers and fund those. Each proposal that reaches a fundable score goes back to the committee where reviewers are then asked, “Is this proposal the best it can be in terms of making an investment in research with a purpose to treat and cure FOP?” We then send back conditional approvals for those grants. We have been made bold choices to increase the scope of proposals and bold choices not to fund any proposals when there are no fundable scores.

Are there any projects or developments to date that IFOPA funded which you are particularly proud of?

It really is true that those of us in FOP research and development are standing on the shoulders of giants. To date, the IFOPA has invested more than 13 million dollars into research traced directly to ongoing and emerging pharmaceutical-sponsored clinical trials. That’s an amazing impact in a disease most people have never heard of.  

Acknowledgment

Thank you to Danielle Kerkovich for contributing to our funder perspective series.

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