Rare Leader: Michelle Davis, Executive Director, International Fibrodysplasia Ossificans Progressiva Association

Title: Executive director

Organization: International Fibrodysplasia Ossificans Progressiva Association (IFOPA)

The Basics
Name: Michelle Davis

Title: Executive director

Organization: International Fibrodysplasia Ossificans Progressiva Association (IFOPA)

Social Media Links:

Disease focus: Fibrodysplasia ossificans progressive is a rare genetic musculoskeletal disorder that causes bones to form in muscles, tendons, ligaments, and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Headquarters: Kansas City, Missouri

How did you become involved in rare disease: Most of my career has been spent working in the nonprofit sector, and in patient advocacy organizations. I’ve always worked for national headquarters, including the National Kidney Foundation and Polycystic Kidney Disease Foundation. There is a type of polycystic kidney disease, a recessive form, which affects children and is a rare disease. And that’s how I became exposed to rare disease. For those organizations, I worked in fundraising, chapter services, industry relations, and legislative advocacy. A headhunter called me about the IFOPA. They had the executive director position open and knowing how much I loved my rare disease experience, I wanted to become more involved directly in the sector. And that’s how I got here.

Previous career: Nonprofit fundraising

Education: B.S. in organizational communication and human resource development from Missouri State University

The Organization
Organization’s mission: Our mission is clear. It is to fund research to find a cure for FOP while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide. Our vision is a cure for FOP that is accessible worldwide. The majority of our resources go into research, but we recognize that while that research is happening, we have to do a lot of things to support and educate families and raise awareness.

Organization’s strategy: Our strategy is around partnership and collaboration. We work very closely with research institutions all around the world. We’re not tied to just one research institution. We look for ways to give researchers and biotech and pharmaceutical companies access to research resources. We have an FOP Registry, Biobank, and Mouse Model. We also have a Preclinical Drug Testing Program. These tools are available so they have access to the resources they need to move FOP research forward more quickly. Every other year we host the FOP Drug Development Forum, a symposium to provide networking and collaboration opportunities among academic researchers, clinicians, biotech and pharmaceutical companies, and regulators. It’s all important, but the Registry has probably been the most important thing we’ve done on the research side. We also promote collaboration in family services. We have a group within our organization called the International President’s Council; it’s a committee of people with FOP and parents who lead FOP organizations and activities in countries all over the world. We meet several times a year to share ideas and program resources and connect about clinical studies and trials. I would say that collaboration is the most important thing at the IFOPA.

Funding strategy: More than half of our funding comes from fundraising that the IFOPA leads, whether it’s our FOP Awareness Day appeal, our In Pursuit of a Cure virtual event, our year-end appeal, or monthly donor program. About 53 percent is fundraising led by the IFOPA, about 35 percent of our funding comes from sponsored programs. It might be sponsorship of our Registry, our FOP Family Gathering or Drug Development Forum, or an observational research study. And then 12 percent comes from families doing their own fundraisers and then gifting that money to the IFOPA so we can do our work.

What’s changing at your organization in the next year: Earlier this year, the first treatment for FOP was approved in Canada. That was a landmark moment for the community. Even though the drug has only been approved so far in Canada, families around the world have this renewed sense of hope. We know the company is in the process of filing for approval in other countries and will be filing with the FDA later this year. There are three other clinical trials currently being offered in FOP with a couple more in the pipeline. So, our focus this year is on educating families about these clinical trial opportunities, keeping people engaged in these trials, but also training our community about the drug approval process and access to approved treatments.

Management Style
Management philosophy: I work alongside my team. I don’t say, “Hey, your responsibility is to go raise $400,000 and let me know if you hit your goal.”  I work alongside them throughout the whole process. I spend a lot of hours every day on Zoom calls (our staff team is remote and was on Zoom even before Covid). We strategize. What should we be doing to promote the Registry? How do we get more researchers requesting access to our Biobank resources? Let’s review the fundraising video that we’re going to send out this weekend. I’m a person who wants my team to own their projects, but I’m right in there alongside them, working with them.

Guiding principles for running an effective organization: You need to develop something that your patient advocacy organization owns. And for many patient advocacy organizations, that’s a registry. A registry provides organizations a place of connection to the families that are living with your disease, but you’re also able to bring in incredible information about the disease. Then you have something that you can offer to researchers and biotech and pharmaceutical companies as a resource to help them in their research and drug development programs. That’s one. The second is that you need to identify what services you can provide your families. When you provide services to families, whether it’s a conference, webinars, or Zoom social event, you are building your community and relationships with families so that when there are clinical study and trial opportunities, you have a relationship with them where you can pass along the information. Clinical studies and trials are the only way any of us are ever going to see treatments for our diseases. We’ve got to make sure that when there are study and trial opportunities patients learn about them and get connected to them.

Best way to keep your organization relevant: One of the best ways that we keep our organization relevant is that we are very engaged in social media with our community. My Facebook friends list includes many friends from my time at the Polycystic Kidney Disease Foundation and now at the IFOPA. It also includes my colleagues running other patient advocacy and rare disease organizations, most of whom I’ve met at meetings. For me, social media is the greatest way to stay connected to them and to engage with them and to learn. Most of my team is on social media and engaged with our families as well. What I share with them is that social media tells us the story of what’s happening in our community members’ lives. When we are in a Facebook group for families living with FOP and see that everybody is talking about the gastrointestinal issues they’re experiencing, then we know we need to go find a physician that can speak to this in a webinar, or maybe we need to be asking questions about this in our Registry. Because our patient population is small—they’re only about 900 people diagnosed in the world—we use social media as a way to stay connected to them, but also as a way to learn from them. That’s how we stay relevant.

Why people like working with you: I’m passionate about the work we do, and I have real compassion for our families. I think people never doubt why I come to work every day. They know that I’m here for the families. I’m here for the researchers and clinicians. I’m here for the pharmaceutical companies. And I’m passionate about our shared vision – a cure for FOP, accessible worldwide. It means that they can trust me and trust the work that we’re doing.

Mentor: I’ve had lots of mentors along the way. I started my first job at the National Kidney Foundation back in 1997 (wow, that was 25 years ago) and I am still in contact with some of the women with whom I worked at that very first job. I haven’t had one single mentor, but I’ve found people at every job that I’ve held to mentor me. I look for people within the rare disease community, whether I’ve heard someone speak or I see them post something on social media or read an article about them or their organization, and I ask them for a call. And then the thing I ask them at the end is, what can I, or what can my team do for you? I want to make sure that when we’re taking advice from someone that we’re always offering to give it back too.

On the Job
What inspires you: What inspires me most is when someone compliments my team. When I hear from a family, maybe someone sends me a message on Facebook and says, “I appreciate what your family services manager did for us,” or “Your fundraising manager made it easy for me to fundraise.” Or maybe they’re grateful for the resources they found in our Ability Toolbox Guidebook which provides tools and tips to help a person with FOP learn to live more independently. That’s what inspires me.

What makes you hopeful: The families make me hopeful—the trust that they put in the people and the process and the hope that they continue to hold on to. Our families live with a progressive, debilitating disease that will eventually leave them frozen in a second skeleton. There is not an intellectual component to our disease. Oftentimes, we say people with FOP have a healthy mind but they are stuck in a frozen body. They find hope in the work that the scientists, the pharmaceutical companies, and the clinicians are doing. Watching them be hopeful, how can I not be hopeful too?

Best organization decision: I think that the best organization decision we made is developing a suite of family service programs. Our mission and our vision are to find treatments and a cure for FOP. That is why we exist. But in 2017, we made a decision as an organization to develop direct services for patients and families. We hired Hope Newport, who’s our family services manager, to lead those programs. What we’ve seen is that it has inspired and provided a connection with us to our families. And it’s created opportunities for us to get to know families and for us to learn more about the disease from families. It’s created this relationship that I think if we were just a research-only organization, I don’t think that we would have today. I was on a call with a pharmaceutical company. They were talking about the work they’re doing, and they had some questions, and I was able to text families and ask questions and get answers right then. That’s because our family services programs have allowed us to build a relationship with our families.

Hardest lesson learned: I think one of the hardest lessons we’ve learned is that sometimes we plan a program or a research initiative and it doesn’t go as planned. Maybe people aren’t engaging in it as much as we thought they would. It’s difficult because we work hard to raise these funds and then you think we’ve made this investment of funds, especially in the area of research, was that a waste? The thing is that in rare research, you have to try all the available avenues that are out there. If you start getting too cautious, and you’re too conservative, you might miss something. That’s a risk that we don’t want to take either.

Toughest organization decision: One of the toughest things that we experience is because we’re an international organization. We receive Facebook and WhatsApp messages weekly from families from around the world. There are families who live in countries that don’t have a physician that knows anything about FOP. They may not have access to resources that you or I take for granted. We were on a Zoom call last year with a family who lived in the Middle East and they couldn’t even get a wheelchair in their country. They have to go to another country just to get a wheelchair because they’re not sold where they live. We have expanded our programs and we offer webinars and our Virtual FOP Family Gathering in 19 different languages, but it’s still not enough to reach everyone. When we are putting the IFOPA out there more, then more families from other countries are reaching out to us. Sometimes, we’re just not able to help them in the way that we can help everyone else. For our staff team, it’s truly painful, but we’re going to keep connecting.

Biggest missed opportunity: One thing that we have not done, but we’re going to do later this year, is creating an emeritus board. It is not a governing board, but a board of prior board members and chairs of the organization. Every nonprofit has to have board terms and board rotation, which is good for the organization, but then you lose that institutional knowledge. Those individuals invested in your organization and it’s important to keep them close and connected. We’ve never had an emeritus board that engages these past volunteers. That’s something that our board decided a couple weeks ago that we are going to start. It will be great to reconnect in a formal way.

Like best about the job: My favorite thing about my job is that I feel like I’m at the intersection of lots of incredible groups. Our families are incredible. They are hopeful and resilient, and I get to work with them. And then I get to work with these scientists, whether they work at an academic institution or a biotech or pharmaceutical company, who are so passionate about bringing treatments and cures to our families. And I get to work with these clinicians who are so dedicated. They answer texts and phone calls at all hours of the day and night and look for solutions to truly change their patients’ lives. And then I get to work with these pharmaceutical companies who are so passionate about bringing these treatments to market. The last group that I enjoy working with is the government. I enjoy working with the FDA. I love it when we have Rare Disease Week on Capitol Hill and I get to go with families and sit there and talk with our Members of Congress about what it’s like to live with FOP and what our families need. This job provides an incredible intersection of all these groups and I am blessed to get to do this work.

Like least about the job: What I like least is that I feel like I can never turn it off—that it’s always there, especially as an international organization. Many days my meetings start at 6 or 7 a.m. because I’m talking to people in other countries. I might get a middle of the night message from someone because they’re in a country on the other side of the world. When I’m on Facebook, I’m always thinking about work. That’s the part that’s hard. It’s hard to shut it off.

Pet peeve: My pet peeve, and you’ll see it in all communities on social media, is bullying. I don’t like it when families come after one another or after an organization, whether it’s our organization, other organizations, or other families and other diseases. Social media is a beautiful tool and it’s a way, especially for these small, rare disease communities, to stay connected. I just hate that sometimes it’s not always used for good.

First choice for a new career: I put myself through college waiting tables and I actually loved it. I loved the opportunity to get to meet multiple new people in an evening. And I loved that when I walked away from there, it was done. Some days I’ll be out to dinner with my family and I think, “Gosh, wouldn’t it be nice just to wait tables, come in and do my shifts, and leave and be done for the day and not have to worry about anything else related to work.” My other dream job is to be the person who names nail polish colors. Where do these names come from? Who’s the person that dreams up these names. I only wish that I could be that creative.

Personal Taste
Most influential book: I had a great opportunity a couple of years ago when it came out to read Lean In by Sheryl Sandberg. And then I had this incredible opportunity to meet with women from all over Kansas City working in different industries, and discuss the book and what it’s like to be a woman in a leadership role in an organization. Knowing that there are other people who had experiences that are similar to mine is calming and reassuring. That opportunity to connect and know that there are people I can network with and call on, was an incredible opportunity. I really appreciated that book, but especially the book club.

Favorite movie: The Shawshank Redemption

Favorite music: I don’t listen to a lot of music, but my family loves country music. If I listen to something, it’s probably country. I do love podcasts. My favorite podcast is Wrongful Conviction.

Favorite food: Pasta or potato chips

Guilty pleasure: I love a good spa day.

Favorite way to spend free time: I love to do hot yoga. It’s something I started doing last summer. I find it’s a way to clear my mind because I get there and have to be so focused on what I am doing.