Rare Leader: Bo Bigelow, Chairman, Foundation for USP7-Related Diseases

The Basics
Name: Bo Bigelow

Title: Chairman

Organization:  Foundation for USP7-Related Diseases

Disease focus: USP7-related diseases are a neurodevelopmental disorder, including autism, speech issues, and cognitive delays.

Headquarters: Falmouth, Maine

How did you become involved in rare disease: We moved to Maine in 2010 and Tess, my daughter, was just a few months old. We suspected something might be going on with her. She has a brother who is three years older than she is. When she didn’t walk and talk at the same rate as my son had, it started to become undeniable. When we got her diagnosis I needed to be with her full-time. Gradually I became more and more her advocate, trying to help her be the best Tess she can be.

Previous career: I worked as a consumer protection attorney. Today I practice disability rights law and civil rights law part-time.

Education: B.A. in French Literature from Georgetown University and J.D. from New York University

The Organization
Organization’s mandate:  We really want to cure this thing. We want to find some treatments for USP7. The two ways we’re going to do that are to find more patients and fund research. We’re working with a scientist at Baylor College of Medicine in Houston. He said, “Give me 100 patients. That will put us on the map.” We’re up to 34. Tess is number 8. We are moving in the right direction. We are finding more. Right now we’re trying to fund a phenotype study.

Organization’s strategy: We’re trying to jump up and down as much as possible to get attention from the media. I made a short documentary that I showed at our film festival. I’ve been interviewed as much as I could get out there—The Washington Post, our local ABC affiliate, NPR, and The Seattle Times. I do a podcast once a week.

Funding strategy: We’re trying to do this phenotyping study right now and our goal is $180,000. Up to this point it’s been individual donors. Our friends and family and their friends and family just writing checks to us. That’s gotten us a good way there. We’re at $100,000 so far. We’re widening our circle and trying to get more people involved. Our strategy is to capitalize on what we have so far. We find one or two new families a month. What we’re trying to do is get them involved and set up a Facebook fundraiser.

What’s changing at your organization in the next year: We are doubling down on finding patients. We have this new initiative—Project Artemis—Artemis is the Greek goddess of the hunt. We’ve got to get to 100 patients. That means getting on some genetic panels. The social media blitz continues. We are also contacting geneticist at genetic centers all over the country saying, “This is our phenotype. This is our researcher. Have you seen any undiagnosed people like this?”

Management Style
Management philosophy: I’m pretty lucky because my crew is pretty motivated. All I have to do is talk about ideas with them and then I get out of the way. I don’t do a lot to manage them. The group’s so small we don’t have any personality conflicts.

Guiding principles for running an effective organization: Rely on people to do what they say they are going to do. If somebody steps forward and says they are going to do something, you have to honor that and give them the space to do it.

Best way to keep your organization relevant: Keep telling stories. The world is changing and the pace is getting faster. People have short attention spans, but I think everybody still loves a good story.

Why people like working for you: I keep it fun. I don’t tell anybody what to do. There are only a couple of things I’m expert at. I’m learning too. I let them be the experts. I think that’s the beauty of doing this now in 2018 is that with the Internet, you can teach yourself anything and they do that.

Mentor: Matt Wilsey (Grace Science Foundation) and Matt Might (NGLY1.Org) have been very generous with their time. They wrote the playbook on this stuff with NGLY1. They give me a lot of guidance.

On the Job
What inspires you: I watch what other people in my position do—people who are trying to do what we’re doing, have a small population and are trying to get their foundation off the ground. I love to see when they don’t take “no” for an answer. There’s a woman in Washington state named Sandra Sermone. She had this idea that when you reach out to scientists to get interested in your disease, she realized everyone wants to publish. She would approach people and say, “Let’s do a paper.” For a while people were blowing her off, but she recognized a condition in her child about early tooth eruption. She contacted some scientists and they agreed and said, “Okay, let’s do a paper.” She’s not a physician, but she’s a published author on this paper because she wouldn’t give up. You hit a hit a dead-end, which we are all doing all the time. Instead of stopping, you keep going.

What makes you hopeful: Collaboration makes me hopeful. One of the things I love about doing this work is the ability to join forces. We all realized it is not a zero-sum game. Just because I get somewhere doesn’t mean you can’t get there too. We share our homework. We share our contacts. It saves us all a ton of time. Someone has already established a list of all the genetic panels and the contact people, why should I have to Google everybody and hunt that info down?

Best organization decision: Our organization is still pretty new. We haven’t made a ton of decisions yet, but starting DISORDER: The Rare Disease Film Festival with Daniel DeFabio was a good decision. I met a lot of awesome people in Boston last fall. This is just the beginning of it. We are going to be on the west coast in the fall of 2019.

Hardest lesson learned: Just because you care about something that doesn’t mean everyone is going to care. You are competing with a million voices out there. It’s hard to be heard.

Toughest organization decision: The goal of our organization is to cure the disease and we decided early on that would not include supporting families and creating the support structure for families as they get their diagnosis. We unofficially do it through our Facebook group, but it’s not what we do. It seems a little heartless and cold, but it’s not what we do.

Biggest missed opportunity: We formed just about a year ago. We haven’t really missed an opportunity yet.

Like best about the job: Working with Becky Raatz, the secretary of our foundation. She’s a self-starter. She has all these great ideas. The public face of our organization is all Becky. And I like working with my wife. She helps me keep my eye on the ball.

Like least about the job: I’d like some more people. People caring for a child with a rare disease have plenty of their own work to do at home already. Having some more people among our patient group who have a little more time to help out and are able to do a little bit more to help out would be great.

Pet peeve: When I’m talking with a potential partner and they say that they are going to do something and they don’t do it.

First choice for a new career: Film producer.

Personal Taste
Most influential book: Why Buddhism is True by Robert Wright

Favorite movie: Rafifi, a French Movie by about a jewel heist.

Favorite music: Funk and soul from the early ‘70s.

Favorite food: Pasta carbonara

Guilty pleasure: Nachos

Favorite way to spend free time: There’s a Star Wars game I like to play with my son on the Xbox and I like to watch movies with my wife.

June 28, 2018