Rare Leader: Deanna Portero, Executive Director, Fibrous Dysplasia Foundation

The Basics
Name:   Deanna Portero

Title:   Executive Director

Organization: Fibrous Dysplasia Foundation

Disease focus:   Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare disease that can cause a wide range of issues. It is genetic, but it is not inherited from family and cannot be passed down. It can be traced to a single random mutation that occurs in the womb as a fetus develops. There is no cure, and there are no treatments to stop or slow a major symptom of the disease, the growth of malformed bone called “fibrous dysplasia.” Fibrous dysplasia bone lesions are weak and prone to fracture. They can cause significant physical impairment, such as loss of mobility, impaired vision and hearing, or chronic bone pain. The amount of skeleton affected by the disease can range from mild to severe. If other organ systems are also affected by the disease in addition to the skeleton, the disease is called McCune-Albright syndrome. People affected by FD/MAS turn to a range of stopgap treatments, like multiple surgeries, hormonal therapeutics, and medical device implants to try and manage their disease. People living with FD/MAS can live full and prosperous lives.  Many people with FD/MAS get out there and kick butt every day. Many others need our full support to overcome not only their physical conditions, but the emotional pain of the discrimination and adversity that comes with a rare disease.

Headquarters: We’re a virtual organization with staff and board members located all over the world. I’m located in the Washington, D.C. area.

How did you become involved in rare disease:  In college, I studied how to influence moral decision-making. I wanted to apply that for the good of society. I had a friend whose sister was living with epidermolysis bullosa, and they introduced me to NORD. That was the first time I was exposed to thinking about rare diseases as a whole as a public health issue. I am a carrier of hemoglobin c trait, and have other personal connections to rare and undiagnosed illnesses, but I don’t think it was the personal connections that drew me in. The importance of the issue just made a lot of sense to me rationally, and I saw it was a field where I could make a difference.

Previous career:  I entered the rare disease nonprofit world after college.

Education: I majored in philosophy and minored in psychology at Dartmouth College. I’ve also held a certification as a Project Management Professional.

The Organization
Organization’s mandate: Our mandate is to make a better world for people living with fibrous dysplasia, McCune-Albright syndrome, and related rare bone diseases, through programs of research, education and support.

Organization’s strategy: The greatest role that our organization can play is the role of catalyst. We prioritize programs and initiatives where our efforts have a multiplier effect. There are a lot of opportunities out there that meet that criteria and could have enormous yields for our community, that we still don’t have the bandwidth or resources to pursue. Our organization is on track to double in size for the fourth year in a row, but we’re still a very small organization. The largest driver of our fundraising momentum is the recruitment of more families every year to hold fundraisers. By definition, any rare disease community is going to be small, so the only way for our causes to become armies is if we enlist friends and family to join the fight as donors too. We hope to develop more corporate partnerships in the near term as well and think that corporate giving could play an important role in advancing our mission in the future.

Funding strategy:  Our research funding strategy is multi-faceted. We believe in the power of funding fundamental infrastructure projects, like our registry. We also believe that seed grants or pilot grants, awarded competitively by an unconflicted review process, are crucial for increasing the amount of public and private funding that will go towards FD/MAS. We’re in the midst of a prioritization process with our Scientific Advisory Council to help identify the most important additional research programs we should enable.

What’s changing at your organization in the next year:  We’ll be developing and launching more formal collaborations with other patient groups that serve the fibrous dysplasia/McCune-Albright syndrome community. We’ve been informally collaborating and supporting each other for years, and I think many of us are ready to take that a few steps further.

Management Style
Management philosophy:  Always start by bringing a clear vision to the table but understand that if you want it to be realized, it can’t be just yours. Share it. Surround yourself with really smart people who can make it better, and who will take it up as their own.

Guiding principles for running an effective organization:  Know the strengths of everyone you work with. Design arrangements where people are mainly playing to their strengths.

Best way to keep your organization relevant: Listen for problems, talk to smart people about possible solutions, choose the best first step, take that step, repeat. In this field, doing anything of significance requires collaboration and working with other institutions, so in an important way to be relevant, you have to be an organization that is collaborative and easy to work with.

Why people like working with you: I think people like working with me because I’m honest, I’m genuinely interested in the pain points and ideas of my collaborators, and because I bring a sense of humor with me everywhere I go.

Mentor: I’ve had far, far too many excellent mentors to dare to create a complete list.

On the Job
What inspires you: It’s cliché, but I think that I’m most inspired by the children I serve. Not the idea of children, but the actual children I’ve gotten to know. It’s obvious to me that they deserve better that I viscerally want to make life fairer for each of them.

What makes you hopeful: What makes me hopeful is that there are very few problems related to rare disease that I see as intractable. There are big challenges, but there are also a lot of solutions. With strategy, time, and funding, progress is not only attainable for a given rare disease, but actually highly likely.

Best organization decision: You can scoop up some extraordinary people if you’re flexible about hours and locations. The person who manages the FDF’s communications has an MFA in nonfiction writing. The person who manages our research programs has an MPH and Ph.D. And our part-time bookkeeper has a CPA. Our board includes a publicity guru, an M.D., a tech executive, a J.D. and more. The number one reason we’ve been able to build such an outrageously qualified team is that for the right people, we’re willing to find a model of working together that works for each of them.

Hardest lesson learned: We’ve lost some exceptional board members to burn out. If I had spotted the signs earlier, I could’ve adjusted what those folks were taking on to be more sustainable. Today, when I see anyone taking on too much, or getting overwhelmed, I do everything I can to remind them that this fight isn’t a sprint, it’s a marathon, and they need to pace themselves accordingly.

Toughest organization decision:  The hardest decision has been the decision to not offer a financial support program. Medical care for FD/MAS in the United States and in other countries without universal healthcare is extremely expensive. FD/MAS can be disabling and receiving care from experienced doctors (who are likely out of state and out of network) can make an enormous difference. For all of those reasons, I know how much of a difference a financial support program could make in people’s lives. I also know that the demand for such a program would be endless, and after the resources are consumed, we are left with the same environment that generated that problem in the first place. This kind of program solves “a” problem, not “the” problem: if we zoom out, we can see it makes a lot more sense for our organization to advocate for more affordable healthcare, fund research for treatments that prevent disability, or increase the number of medical centers that are likely to give good care, than to hand out small checks to a large number of people. It’s still heartbreaking not to be able to directly financially assist struggling families.

Biggest missed opportunity: There were periods in the organization’s history when responsiveness to email was spotty. This was a huge mistake. People don’t forget whether you were there for them when they needed you.

Like best about the job: I love how many teammates I have. There’s hardly anyone who is truly on the other side of this issue, so once I’ve shared our mission with someone, 99 percent of the time I’ve found a new ally. I love that.

Like least about the job: I’m a people person, so working remotely for over three years has been challenging at times.

Pet peeve: Advisory bodies and feedback sessions where the conveners are less interested in community input and more interested in stating that they collected community input.

First choice for a new career: I am absolutely fascinated by social enterprises, and socially-oriented venture capital. I think I’m drawn to the scale that those organizations operate at compared to organizations and initiatives in the nonprofit sector. I would also love to hold public office one day.

Personal Taste
Most influential book: The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee

Favorite movie: True Romance

Favorite music: I like ambient music like Brian Eno

Favorite food: I’m a native New Yorker, so I have massive nostalgia for classic NYC foods like bacon, egg and cheese on a roll, and halal cart street food.

Guilty pleasure: Watching near-lethal amounts of Netflix and Hulu

Favorite way to spend free time: Cooking and playing board games with friends

December 13, 2018