Leadership, to me, is defined as having the courage to imagine a better future and the conviction to not give up despite the challenge. No challenge worth solving is easy and it is a leader’s job to convince others to believe in the vision of a better tomorrow. Whether this is solving the problem of climate change or developing life-saving medicines, leadership is required in all instances. They are a rally point and cheerleader who sees the vision of what could be and stops at nothing to make that vision a reality
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Rich Horgan.
Rich is the Founder and President of Cure Rare Disease. He has a deep passion for rare diseases. With a younger brother impacted by Duchenne muscular dystrophy, Rich has a strong interest in accelerating promising treatments for the disease. He formed a collaboration with world-class researchers and clinicians to pioneer the rapid development of customized therapies for Duchenne and other rare diseases. Prior to making his foray into biotech, Rich had extensive experience working in new business development at Corning Incorporated where he led the successful launch of a new product line. He also launched a successful car washing business in upstate New York. He holds a BS from Cornell University where he graduated summa cum laude and an MBA from Harvard Business School where he was awarded the Blavatnik Fellowship for Life Science Entrepreneurship.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit about how you grew up?
My brother, Terry, and I grew up in a small town in upstate NY called Montour Falls. Some of my earliest memories are of working at my parents small convenience store cleaning shelves. As a function of my parent’s small businesses, I was exposed to an entrepreneurial environment from a young age. It really shaped who I am today in building entrepreneurial skills and independence. As my father liked to joke, “if we don’t fix it, no one else is going to”. Besides helping out at the family business, my brother and I enjoyed playing video games and were (are) huge Star Wars fans. The idea of good triumphing over evil was a concept with which I resonated.
I had the fortune of attending Cornell University where I studied Applied Economics and Management. After graduating from undergrad, I started working in new business development at Corning Inc. while also building a car washing business with my family. It was a stressful but incredible experience to build something from the ground up and watch that business become successful.
Is there a particular book that made a significant impact on you? Can you share a story or explain why it resonated with you so much?
A book that deeply resonates with me is Peter Thiel’s “Zero to One.” It chronicles the challenge of starting a business from nothing. This idea is something I grew up with, put into play when building the car wash and often reference when building Cure Rare Disease and the new therapeutic technology our collaboration is developing. Without significant privilege, it’s incredibly difficult to muster resources, build a network and convince individuals to follow you to do something that’s never been done before. I found the book to be inspiring because the challenge of building something new, as with Cure Rare Disease, is that oftentimes there isn’t a 1:1 example to follow. It’s both the challenge as well as the satisfaction of new businesses, therapeutics or endeavors. As a mentor of mine likes to say, it’s our job to convert the unknown into the known for the benefit of humanity.
Do you have a favorite “Life Lesson Quote”? Do you have a story about how that was relevant in your life or your work?
Yes! The quote by Margaret Mead is incredibly relevant to my life and work. It reads, “Never doubt that a small group of thoughtful, committed, people can change the world. Indeed, it is the only thing that ever has.” The first time I heard this quote it gave me chills and still does. It exemplifies my life and life’s mission perfectly. We are a small group of hugely dedicated individuals (Cure Rare Disease & collaborators) who are advancing a first-in-human therapeutic to stop a condition that’s claimed every life it ever touched. We have a shadow of the resources that larger pharmaceutical companies and nonprofits have but we must make do with the resources earned regardless. It often struck me as paradoxical that a large group could affect less change than a small dedicated group but in building Cure Rare Disease, it became evident that the nimbleness, passion, dedication and tenacity of my small team has the ability to outweigh behemoth organizations because it’s not a 9-to-5 job for us. It’s our lives and the lives of our loved ones at stake in this battle against rare disease.
Ok, thank you for all that. Now let’s move to the main focus of our interview. You are currently leading a social impact organization. Can you tell us a bit about what you and your organization are trying to address?
I founded Cure Rare Disease, a nonprofit biotechnology company, with the aim of developing therapeutics (medicine) customized to the individual. Rather than develop a medicine and find patients who it is amenable to, our mission is to develop medicines tailored to the individual they are trying to treat. There over 7,000 rare diseases impacting an aggregate of 30 million Americans; only 5% of these diseases, some of which impact only a handful of people, have treatments. This leaves a huge need for effective medicines. However, given small patient counts, many diseases lack the economic incentive to have medicines developed for them. My brother, Terry, now 25 years old, is impacted by a rare disease called Duchenne muscular dystrophy — it is characterized by progressive muscle-loss and weakness ultimately claiming the lives of people it impacts in their mid twenties (currently). Given my brother’s age and genetic mutation, there are no therapeutics available for him and so my family and I were told to, “go home and love him”. This answer, to this day, enrages me and is unacceptable.
With the opportunity to attend Harvard Business School and be awarded the Blavatnik Fellowship in Life Science Entrepreneurship (the program established by the global philanthropist, Sir Len Blavatnik) I met the leading researchers and clinicians in the field. I formed a team of the world’s leading researchers and clinicians to execute on the mission to develop a customized therapeutic for, at first, Terry. Since the success of correcting Terry’s cells in a dish using a technology called CRISPR (genome editing), we’ve expanded our pipeline to include other children suffering from the disease who have rare mutations and who are in a similar situation as Terry. Ultimately, we aim to prove to the world that customizing therapeutics to an individual is possible and that the process and technology we are using will become a tool in humanity’s collective toolkit to treat diseases for which there is limited economic incentive but whose patients nonetheless need help.
Many of us have ideas, dreams, and passions, but never manifest it. We just don’t get up and do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?
Growing up with a sibling impacted by a rare, fatal (at the moment) disease, has a massive impact on the mentality and drive of the unaffected sibling. There were a number of triggers along the way that ingrained in me a sense of needing to do “something”, moments like seeing my brother fall or him being in pain while feeling powerless to help him against an invisible threat.
I spent the first 24 years of my life in a small geographic area — growing up in a small town, attending college in an adjacent county and then working full time in another adjacent county. I did this because I didn’t want to move far away in fear of not being able to help my brother in an emergency, such as a fall. In moving to Boston to attend Harvard Business School, I felt more vulnerable since home was over 6 hours away. That fear materialized soon into my first semester when my brother fell and fractured his leg. For the average person, a fall is neither serious nor life-threatening. However, with a disease that results in brittle bones, lost muscle and a weakening heart, a fall is life-threatening. With Terry fracturing his leg, there was nothing I could do but wait for news. Enough was enough. I was tired of fighting a losing battle with nothing to do but hope for a random company to help my brother. No one loves him more than his family. It was at that moment that I decided to direct years of pent up anger, hopelessness, frustration and fear into building an organization that could help him. With the problem being clear, then it became about finding a solution and building a team that could bring the vision into reality.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
A number of individuals are being positively impacted by the work that Cure Rare Disease is advancing. Besides my brother, Terry, a story that comes to mind is another patient of ours, Max who is 4 years old. Max is a young man who suffers from Duchenne muscular dystrophy, the same as my brother. His favorite superhero is Batman. We are developing a customized treatment for Max and have made significant progress in correcting his cells as we have done with Terry. I have the privilege of getting to know Max, his wonderful family and his supportive community. Max is too young to know the severity of his disease but in Max I see the potential for modern medicine to truly change the course of his life, for the better. If we are successful, Max will never know the pain of the disease, he will never know the anguish of not being able to walk nor will he have to grapple with the implications of a fatal disease. In Max I see hope but not only hope for Max, hope for his loving family and for his community.
Are there three things that the community can do to help you in your great work?
Absolutely! The first thing people can do is to educate themselves about the prevalence of rare disease and the nonprofits in the space. The dedication of a nonprofit’s leadership can be clearly seen in the pay structure — how much money actually goes to the cause vs. how much goes to pay executives? This is called overhead and it’s critical that the overhead of nonprofits remain low else less of your dollar goes to furthering the mission.The second thing is get involved and volunteer with a nonprofit. Nonprofits like Cure Rare Disease rely on the support of the community to advance our mission. We rely on the community to host fundraisers to allow us to continue to advance the mission. Thirdly, people can donate. Nonprofits like Cure Rare Disease rely on the generosity of individuals to advance our mission. Cure Rare Disease is truly the first nonprofit biotechnology company enabled largely by grassroots fundraising. We are fortunate to have raised over 1.5M dollars from over 200,000 people. Those interested in learning more can visit our website, cureraredisease.org. Every dollar and every supporter matters, especially in an age of COVID-19.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership, to me, is defined as having the courage to imagine a better future and the conviction to not give up despite the challenge. No challenge worth solving is easy and it is a leader’s job to convince others to believe in the vision of a better tomorrow. Whether this is solving the problem of climate change or developing life-saving medicines, leadership is required in all instances. They are a rally point and cheerleader who sees the vision of what could be and stops at nothing to make that vision a reality. Leaders are a force for others to draw strength from to push forward. Being a leader means sacrifice but knowing that the sacrifice could well change the world. Leaders aren’t born, they are forged through the crucible of life and there is no one standard for a leader. I’ve had the honor of knowing many leaders and the best leaders I’ve met are courageous enough to dream and crazy enough to believe that the dream can become reality.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
- It’s all about the people you surround yourself with.
Relationships are key. Developing and nurturing relationships with people who you can learn from throughout the journey is really important. When doing something that no one has before, it’s important to be able to reach out to people you trust to get advice and guidance. Moreover, I find the support of my family and close friends to be incredibly enabling. I know they have my back and that gives me the confidence and sustains my willpower to push forward on even the most difficult days.
- Don’t be afraid.
For me, diving into a totally new industry of biotechnology, one that is extremely complex, was scary at first. But it’s not impossible. I connected with people in the field, spent countless days reading academic publications and constantly asked questions all in an effort to increase my understanding of a subject that I don’t have formal academic training. Don’t be afraid to jump into new things but do have the conviction to stand fast and not give up. Don’t be afraid to ask a “stupid” question. It’s the only way to learn and you probably aren’t the only one wondering
- Self-care is critical to changing the world.
In the beginning of this journey in 2018, I felt as though I needed to dedicate as much time as was in a day to advancing. I felt that there was no time for sleep and that every waking moment not spent advancing the cause was a wasted moment. I failed to recognize that the journey is a marathon and not a sprint. This lack of understanding led me to have serious issues with anxiety and depression. I never took the time to stop and recharge. Only through a close friend (again, see #1) was I finally able to see how corrosive and damaging this was. Take a day off now and then. Spend time with those you love. My generation is constantly going but we need to learn to take a minute and stop.
- Learn to balance relentlessness with patience.
This continues to be a challenging lesson for me to learn. I often feel that I need to continuously keep the pressure up. However, there is such a thing as too much pressure. Too much pressure on your team and too much pressure on yourself. It’s important to learn that change, especially great change, takes time. Oftentimes relentlessness is absolutely necessary to get the job done but be careful not to alienate the very team that enables progress to happen.
- Do it for the right reasons.
All too often in business school I felt as though a number of my peers were pursuing jobs or entrepreneurial endeavors because it sounded cool or would potentially yield great payouts. This is not the right reason to dedicate your life to a cause and that rationale will be insufficient to propel you through challenging times. Champion a cause because your passion for it is so great that you can’t help but pursue it. Or pursue a cause because your loved one’s life depends on it. There are many reasons to pursue a cause, just make sure it’s truly the right one.
If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
If I could give any advice it would be: don’t be afraid to try. Changing the world, or a part of it, is some of the most grueling work imaginable. It will test every fiber in your being and absolutely change you as a person. But nothing great is ever earned if you don’t have the courage to try. The world desperately needs people who can dream of a better future and who are not afraid to challenge the status quo to bring that dream into reality. More than ever, we need courageous people to try and make the world a better place.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
There are so many people who would be great to meet who are changing the drug development ecosystem. However, I resonate deeply with the work that Sean Parker is advancing in precision medicine for cancer. Our two models are driving towards a similar outcome and having the opportunity to hear his thoughts and get his advice would be incredible.
How can our readers follow you online?
I welcome all readers to follow our story. This is a mission and organization that is being built from the ground up and by grassroots efforts for the people. I invite anyone who is interested to follow us on social media (@cureraredisease), to reach out to me by email ([email protected]) or Twitter (@richhorgan), or simply visit our website (cureraredisease.org). It’s incredible what a determined individual can do though too often I worry that our internal voices dissuade us from taking the first step. Don’t be afraid. There’s nowhere to go but upward.
This was very meaningful, thank you so much. We wish you only continued success on your great work!