RARE Daily

Rare Leader: Geoffrey Gee, Executive Director, Neuromuscular Disease Foundation

March 17, 2022

The Basics
Name: Geoffrey Gee

Title: Executive director

Organization: Neuromuscular Disease Foundation (NDF)

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Disease focus: GNE myopathy is a rare, inherited disease that causes progressive muscle weakness. The disease is caused by defects of the GNE gene. In this disorder the defect of the GNE enzyme disrupts the functioning of the sialic acid metabolic pathway and interferes with normal muscle function. GNE myopathy typically affects young adults. One of the first signs of the disease includes inability to lift the front of the foot (foot drop). This may cause toes to drag while walking. As the disease progresses, it usually leads to physical disability. GNE myopathy does not affect the muscles of the face or swallowing ability. It does not typically affect the heart or breathing muscles. GNE myopathy is a rare disease estimated to affect around 6 in 1,000,000 people. It is found in populations worldwide but is more common in certain populations. Like many other rare diseases, GNE myopathy is under diagnosed and many people with the disease remain undiagnosed.

Headquarters: Beverly Hills, California

How did you become involved in rare disease: It was through Lalé Welsh, who was then the CEO of the organization, and was stepping down. She was looking for somebody to replace her and found me after having spent seven years building the organization up. I don’t know if you know much about the disease, but it was said to primarily be a Persian Jewish disease, but it is actually worldwide in numerous communities. We have representation in nearly 50 countries around the world where there are both patients, doctors, and scientists who are involved as well as NDF patient advocates. It’s an international, global disease and very few of the people involved are Persian or Jewish.

Previous career: Practiced law in England and Australia, business and nonprofit executive

Education: Law degree Law Society’s College of Law

The Organization
Organization’s mission: The mission is simple. The initial stage is to get to the clinical trial stage to find suitable treatment for those with the disease. The ultimate goal is a cure. Cure means different things to different people. But to me cure means the ability of people with the disease to live a normal life despite their physical challenges, and for young people, to get diagnosed through testing. As you probably know, there’s the Jewish genetic disease test that young couples can take if they’re going to get married and there’s often a rabbi or a Jewish doctor involved who will usually encourage them to go and get a test.

Organization’s strategy: The strategy is to promote the global aspects, the international aspects of the disease, to encourage more people to get involved both from a fundraising perspective and from a patient assistant perspective. That is the current short-term mission. The long-term goal is gene therapy and a cure.

Funding strategy: The general strategy is outreach to donors who might have family members with the disease. We do have a Los Angeles gala once a year. For the last two years, COVID affected us and there was no gala. Because I have some contacts in Beverly Hills and in the motor industry, I asked Beverly Hills Aston Martin if they would let us have a car for the event. They said “There’s an SUV called the DBX. We will allow you to auction it off to the highest bidder who will then get the reward of an Aston Martin experience for the weekend.” I would rate that as priceless. We are also having a casino night that we are calling Casino Royal.

What’s changing at your organization in the next year: My focus is the continued effort on research. We have an extraordinary group on the scientific advisory committee, experts in the field who are dedicated and devoted to finding a cure. We are continuing the effort with those 20 plus people. We have preclinical studies going on with mouse models and are using every contact we have to enlarge the global footprint of the organization.

Management Style
Management philosophy: It’s always been an open-door philosophy. As a lawyer, it was usually a closed-door philosophy because people didn’t want others to hear what was being said. But both as far as the board, employees, scientific community, consultants, and others are concerned, I want them to communicate and contact me. I want them to share their concerns, their problems, and their success because the more there’s communication, the much easier it is to resolve and solve things.

Guiding principles for running an effective organization: The answer is to always recognize this is a nonprofit organization and that spending money is actually spending donors’ money. The idea is that you should be precise in the spending. There are challenges with every organization. If COVID taught us anything, it taught us that you don’t need an office and office expense because people can more easily work from home. That was a change that was forced upon us. Frugality is important, but the mission is more important and focusing and directing funds is what it’s all about.

Best way to keep your organization relevant: The simple answer to that is move towards clinical trials, move towards finding a cure, and encourage people to expand the footprint of the organization so that people all over the world know much more about us.

Why people like working with you: I’m an Englishman. I used to go to Torah study on a Saturday morning in my reform congregation. I would always dress up, wear a jacket and tie until one day the rabbi said, ”Look Geoffrey, you don’t need to do all that. This is very communal. The only good thing is you’ve got this great accent. If anybody ever asks you to read the phone book, that’s a compliment because all they want to hear is your accent.” It’s an odd world. Where I come from, everybody talks like this, but over here it seems to be a plus.

Mentor: I learned a lot about and got the passion for estate planning, planned giving, and endowments from one particular fellow, whom I succeeded at the United Jewish Appeal. His name was Stanley Abrams. He was South African. Between us, we had accents galore. He was a great mentor and taught me everything I know in those fields. There were life lessons that I learned–primarily that the art of solicitation as they call it, asking for money, is 90 percent listening and 10 percent talking. If you do that, you’re heading in the right direction.

On the Job
What inspires you: My inspiration comes from meeting, talking to, and seeing people who are getting the benefit of what we do. As an example, a person contacted us through email. One of our patient managers here in California reached out to this individual who was extremely concerned because she had just been diagnosed. “Where was I going to go? What was going to happen to me?” she asked. The patient manager gave her some answers and the loveliest note came back saying “Thank you so much. You have given me hope.” That’s what it’s all about. You’ve got to give people hope, because with hope, change can happen.

What makes you hopeful: I am an optimist. I’m forever hopeful. Throughout my life, I’ve had so many different guises. I’ve always had a good feeling about everything. Yes, bad things happen to good people, but if you can overcome those things, then it gives you the strength to be ever more hopeful.

Best decision: I think my best decision was going to law school. I think that set me up for everything else that I’ve done. My dad said to me, “At some stage you can be an accountant. You can be a lawyer. You can be a doctor. You can be whatever you want, just choose.” I chose law. I didn’t like the sight of blood and figures at that time drove me crazy. I became a lawyer and I think that was probably the best decision I’ve ever made. I’ve forgotten much of everything that I knew, but because of the training, I got everything that I ever wanted.

Hardest lesson learned: I think the hardest lesson learned in life is that there’s always another way of doing things. “No,” doesn’t always mean “no.” “No” can be “No, not now” and “no” can be “Wait until next week,” but “no” generally isn’t a good answer. You have to be thoughtful. You have to encourage people to be positive and decide that there is always another way round.

Toughest organization decision: It’s a perennial. I was the firing guy. People thought it was easy. They thought I was the right guy to fire people because people always liked the accent and the way that I put things. But telling people they don’t have a job anymore is always a hard decision. Sometimes it’s for the right reasons. And sometimes it’s actually for the wrong reasons, but that is one of the toughest things one has to do. I’ve done it many, many times, and it never gets easier. You have to be very sympathetic to the person who’s losing their job. I heard the other day that a former colleague was fired by voicemail. Any human being that would actually say to somebody “you are fired” on a voicemail—that’s reprehensible. You don’t do that. That’s just the absolute pinnacle of not doing what‘s right.

Biggest missed opportunity: I think it’s still developing, I know that the next three years for this organization are going to be strong from a scientific perspective. We’re going to move things ahead in a scientifically rapid manner, but it always takes time. From a fundraising perspective, it’s going to be the same. As people realize that there’s a scientific approach that is working, we’ll get to a phase 1, to a phase 2, and then a phase 3. Eventually we’ll get to first-in-man or -woman.

Like best about the job: It’s the people. Everybody is passionate about what they do. It’s not about money. It’s about how we can help others. It’s the old tikkun olam [Hebrew for “heal the world”]. Let’s cure the world, one person at a time.

Like least about the job: It’s not going quickly enough. Science takes time. Fundraising takes time. Every day is another day—another chance to raise another million dollars. It’s another chance to get the science even further along. So, it’s time. Everything takes time.

Pet peeve: Lack of time. That’s the problem. You can’t be in 10 places at once.

First choice for a new career: A goalkeeper for an English Premier League soccer team. I’m too short and now not athletic enough.

Personal Taste
Most influential book: I’m a great Winston Churchill fan. Anything he wrote I absolutely devour. He was a great man from his early days, the early Winston, right through the tome of the second world war, he was a great man.

Favorite movie: I’ve always been a Star Wars fan

Favorite music
: Anything classical

Favorite food: Anything my wife cooks. She’s a chef. I never complain. In lockdown, a perfect place to be. It’s wonderful.

Guilty pleasure: English football. I can’t get enough of it.

Favorite way to spend free time: Well, the answer to that of course is, what’s free time? I’m busy all the time. I like to keep it that way.



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