Rare Leader: Daniel Lewi, Founder and CEO, Cure & Action for Tay-Sachs Foundation
January 16, 2020
Name: Daniel Lewi
Title: Founder and Chief Executive
Organization: Cure & Action for Tay-Sachs Foundation
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Disease focus: Tay-Sachs is a rare progressive neurological genetic disorder that is caused by the lack of the Hexosaminidase A enzyme, which plays the important role of clearing away GM2 waste in the brain. Tay-Sachs sufferers have two basic problems: they don’t have enough (or any) Hexosaminidase A (Hex-A) enzyme and they end up with too much GM2 waste. Hex-A is an enzyme that is created outside of a cell and absorbed into the cell. When the enzyme is mutated (like in TSD), the cell does not recognize it and a quality control mechanism within the cell will not allow the mutated enzyme to be absorbed. Hex A’s primary job is to break down waste inside a storage area in a cell. That storage area is called a lysosomal storage area and that is why Tay-Sachs is considered a Lysosomal Storage Disease (LSD).
How did you become involved in rare disease: The CATS Foundation was established in June 2011 by my wife Patricia Lewi and me after our daughter Amelie was diagnosed with Tay-Sachs at 15 months of age in March 2011. At the time there was no U.K.-based charity dedicated to providing support for families affected by Tay-Sachs or Sandhoff disease and the charity’s focus is supporting families while also raising awareness of the diseases. Sadly, Amelie passed away in December 2017 at the age of 8.
Previous career: I currently work in business development for a health technology company.
Education: BSc in psychology and sports medicine from Liverpool John Moores University, and an MSc in applied psychology from Liverpool Hope University
Organization’s mission: Our mission is to find a cure for Tay-Sachs disease. Our plan is to support families as much as we can until we have that cure that can save the children from the effects of the disease.
Organization’s strategy: Our strategy is to get involved in as many research projects as possible. We look at curative techniques and we also look at symptom management as a way to improve quality of life. Because even if we don’t get to that point of having a cure yet, we want to make sure that the kids have as high a quality of life as possible. That’s the most important thing. And do that by funding research.
Funding strategy: We are a small chapter. It’s different in the U.K. than it is in the U.S. We don’t have access to huge amounts of money in terms of donors. What we do is work with research teams and pharma companies to help them secure funding. We get attached to projects that way. We use any money we raise to help support families with equipment, respite, funding for funerals and things like that. We don’t do any kind of direct research funding anymore. What we mainly do is help projects get that funding from large organizations and national authorities.
What’s changing at your organization
in the next year: Next
year we have our first clinical trial starting. When we started the charity
eight years ago, there was nothing. We worked hard to get over the line next
year and then potentially another trial to happen over the next 12 to 18
Management philosophy: I like to think there’s nothing we can’t do when working together as a team. I’m very much about working with everyone. I don’t see us as a single organization working towards a goal. We have partner organizations throughout Europe and the world, other disease charities we are leaning on for support, and also we work well with research and pharma.
Guiding principles for running an effective organization: I’m big on transparency. I believe that we need to share our information with our members and make sure we don’t sell them any false promises. In the past, many organizations have fallen into that habit of not being completely transparent. With our families who support us, we keep them aware of all of the work we are doing, the research progress, and things like that.
Best way to keep your organization relevant: The most important thing for our members is to make sure we are meeting their needs. Things have changed even from a year ago. Being online plays such a big part of what we do. We use that as our main support tool in terms of networking, keeping in touch with people. Eight years ago, that didn’t happen. We had more face-to-face meetings, but everyone is much more literate online, and it just makes a big difference, especially with the children we support because their health is so fragile. Being able to communicate digitally has made a big difference.
Why do people like working with you: I get things done. I’m one of those people who don’t take “no” for an answer. That’s ingrained in me from a young age. I use that ethos, which has been helpful. I just want to get things done all the time.
Mentor: My mentor is one of my bosses, Ben Lamberg. He showed me how to be a good manager. He once said, “You always employ people smarter than you.” I can say no more. You get more done early. I believe that my whole teamwork belief came from him. He really inspired people to work hard.
On the Job
What inspires you: The families, my daughter, and having seen the struggles she had. She passed away at the age of eight. We though she’d only live until the age of two. Getting to know what they go through, that’s what inspires me to keep working toward the goal of a cure.
What makes you hopeful: In the last eight years since we set the charity up, we’ve got two clinical trials starting, two more starting in the next 12 to 18 months, about four more research projects going on. We’ve got a support network not just here, but throughout Europe. We have conferences, a support network, which is distributed by the national health services. These are things that didn’t exist eight years ago that we’ve seen happen so quickly, it has given me hope that more change can happen and that we can get the cure very soon.
Best organization decision: I think our best decision was helping other charities set up in Europe. We are small, but there are so many different cultures, languages, and health systems to take into consideration. What we did was to help set up charities in other countries to provide support and help. That has meant more and more families are supported. We’re a rare disease, but we have a huge network because of the organizations that now exist in different countries, which didn’t happen before we were set up. That’s been a pretty good decision.
Hardest lesson learned: Transparency to me is an important thing and I learned quite quickly it doesn’t work both ways, which is quite sad. We always have to chase for information from researchers and pharma companies in development of any project they are doing in the disease. I thought people would be a lot more forthcoming and share information.
Toughest organization decision: We had to announce one of the research projects was delayed by two years. It wasn’t due to anything to do with funding. It was more procedural. It was devastating because there were families that pinned their hopes on this treatment. It was heartbreaking. Tell them that was heartbreaking. We had an element of responsibility and that was a difficult decision to tell people that.
Biggest missed opportunity: I think maybe having a closer tie with charities that support the disease on other parts of the world is probably an opportunity we have missed out on and should probably work harder to do in the future.
Like best about the job: If we can change the life of a child affected by a terminal disease even by 1 percent it is a huge thing. We always tell our supporters when they donate to the charity is that even a 1 percent improvement of someone’s life is huge, especially with this sort of a disease. Anything that can make them more comfortable makes such a big difference. Knowing that you are helping people with such a difficult time is a great part of the job.
Like least about the job: What I like least is that children die and that children are still dying. Having been through that, I understand what the parents are going through. It’s awful and they’ve all died from the disease because we are not there. That’s the hardest part.
Pet peeve: I hate people who are stoppers—people who stop projects or stop work from moving forward. Children are dying and the reason you are stopping a project is because a form is filled in incorrectly. I find that very frustrating.
First choice for a new career: I’d love to be a rugby player.
Most influential book: Ringworld by Larry Niven
Favorite movie: Mr. Mum with Michael Keaton (Mr. Mom in the United States)
Favorite music: I’m into jazz
Favorite food: Steak
Guilty pleasure: Coffee
Favorite way to spend free time: Running. I run a lot. It’s just a time to clear my mind.
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