Michael Hund of EB Research Partnership: 5 Things You Need To Know To Successfully Lead A Nonprofit Organization
Embrace the Obstacles: Know that at every challenge you encounter, most likely someone else has turned back. Be the one that takes an obstacle as an opportunity to climb to new heights. Be a pioneer. Make new maps. Turn the uncharted into the understood. Einstein said, “Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.”
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Michael Hund.
Michael Hund is the CEO of EB Research Partnership, a game-changing medical research organization dedicated to curing the life-threatening genetic rare skin disease Epidermolysis Bullosa (EB) and pioneering the innovative business model of Venture Philanthropy. Michael has spent his career dedicated to transforming healthcare for those battling disease, previously serving at the Multiple Myeloma Research Foundation and the actor Paul Newman’s Hole in the Wall Gang Camp for children facing serious illness. Michael received his BA in Philosophy from the University of Kansas, CORe credential from Harvard Business School, and MBA from the Yale University School of Management.
Thank you so much for doing this with us. Before we begin our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”?
Thank you for having me and thank you for your work to shed a light on high impact nonprofit organizations and effective philanthropy.
I was raised in a small farming community in the Flint Hills of Kansas by a father who was a sixth generation cattle rancher and a mother who was a psychologist born and raised in New York. The dichotomy of one parent coming from rural Midwestern America and the other from one of the biggest cities in the world created a perspective of humility and possibility, an understanding and acceptance of how diverse communities can be, and an ability to adapt and appreciate different cultures and views.
Can you tell us the story behind why you decided to start or join your non nonprofit?
My upbringing shaped the foundation of who I am — paired with moments and experiences, I knew that a life of service was what I was meant to do.
One experience that stands out was when I was 18 years old — I was driving a small pickup truck across the country to volunteer a week as a counsellor at Paul Newman’s Hole in the Wall Gang Camp. The camp is for children battling life-threatening illnesses, and I spent the week working with children living with cancer, sickle cell disease, and HIV. The experience of learning courage and perseverance from kids so young facing so much and how they managed to approach every day with positivity and hope, was a paradigm shift in my life. From that moment forward I realized I wanted to spend my life helping young people confronting disease and leverage my talents to impact a better life for them. I wanted to dedicate my time on this earth to helping to cure disease, to solve the problem at its core. For as long as I can remember I was always fascinated with solving complex problems, however it was this experience that made me change my ambition from law school to a life of service to the paediatric disease community. Along the way I was rewarded with realization that the pursuit of selflessly committing to a cause greater than oneself, provides the greatest fulfillment life has to offer.
Can you describe how you or your organization aims to make a significant social impact?
EB is one of 7,000 rare diseases that affect 400 million people across the world, that’s 10% of the global population, more than cancer and AIDS combined. Yet, 95% of those diseases, including EB, do not have a single FDA approved treatment. The work we are doing at EB Research Partnership is changing that. There will be more clinical trials for EB in the next three years than the last 10 years combined. We’ve gone from two to more than 40 clinical trials and now for the first time ever we have had four Phase III clinical trials, the last phase before treatments are up for approval. Now is a critical moment in time. We have the opportunity to deliver treatments and cures for much deserving families.
Curing EB is not an “If”, it is only a “When”. Many diseases have hundreds or even thousands of mutations. Researchers spend an eternity trying to decode an infinite array of possibilities. But in the EB community we have pinpointed the mutation that causes EB down to one gene. The gene that allows our skin to heal. We have discovered our target. We have it in our sights. We have a uniquely solvable problem. There are researchers across the world leveraging cutting-edge technology like gene-editing, exon-skipping, and mRNA to solve our problem. Now it is up to us to accelerate research from a bench in a lab, to the bedside of a patient at the speed of light.
Bold missions are deserving of bold business plans. We operate more like a Fortune 500 company than a typical nonprofit. We partner with technology companies like Amazon and approach medical research like venture capitalists with a cause. We find the most promising research projects. We vet them through our world-class scientific advisory board. Then, in exchange for funding research, we take a financial interest in the work of the university or business. When those projects succeed, we generate a return on investment and reinvest our shares back into research until a cure is found. Creating an ROI for us that is Return on Impact.
We have a plan to defeat EB. It’s a plan that not only promises to change the lives of families fighting this disease but also to change the way rare disease treatments are found. The research we are funding and the business model we are leading are scalable. We are pioneering the model to cure disease. By fixing a single mutation we can change the lives of so many.
Without saying any names, can you share a story about an individual who was helped by your idea so far?
For those living with EB time is a valuable asset. EB is devastating and life-threatening. The vast majority of those affected are children as many don’t live long into their adult years. Every day is filled with pain, inside and out. Life consists of daily wound care including hours long bleach baths and full body bandaging, all of which is excruciating and time consuming. Daily activities such as walking, eating and seeing become difficult, painful, and monumental tasks the rest of us take for granted as normal parts of our day.
We are the only organization fully focused on accelerating and funding treatments and cures to deliver hope and healing for all those who battle EB. When we accomplish this, what will our future look like? Kids with EB will be able to play, run, and ride a bike just like other kids. It means that a schedule once full of doctor visits, bleach baths and hours of bandaging can be filled with vacations and new adventures. It means no more fear. It means no more pain. It means a cure. And it is our hope that together, we can make EB history and in the process show the world how cures are found.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
- Watch this 3 minute video on our mission, narrated by our Co-Founder Eddie Vedder: https://youtu.be/WjXV3h5wUfc
- The biggest obstacle to curing EB isn’t science, it’s funding, so visit our website to learn more and consider making a donation: https://www.ebresearch.org/
- Tell a friend, come to an event, or reach out to our team, we’d love to hear from you.
How do you define “Leadership”? Can you explain what you mean or give an example?
I believe a strong moral compass, the ability to build authentic relationships, and perseverance are instrumental to leadership.
As leaders, on any given day, there are so many decisions we need to make. Having a strong moral compass is critical to ensure that decisions are guided by a set of principles and ethics. I have often found that when the pressure and stakes are high, holding a set of values to commit to doing what is right provides a True North to navigate through even the most difficult decisions.
Leadership requires communication and connection across many different stakeholders, and the ability to build authentic relationships is paramount. In my role, I work across the patient community, the medical and research community, biotech and pharmaceutical companies, vendors and firms, our Board, our staff, supporters and constituents, and many others. While most often we can unite around a shared purpose of delivering treatments and cures for EB, the path in which we arrive there can differ. Therefore, leading a diverse community of stakeholders requires a commitment to build authentic relationships that are transformational not transactional, listening and learning what motivates individuals to take action, and working towards a realization that as a collaborative community we can accomplish so much more than any one force alone. To accomplish big audacious goals like curing a rare disease, we must dive deep into the relationships that drive the community and emerge with a commitment to come together around a shared mission, a purpose greater than any one individual, and by being inclusive of independent ideas that lead to engaged innovation.
In medical research we see more failures than successes, in fundraising you get more no’s than yes’, with innovative ideas there are always more skeptics than supporters. However, I believe that in the pursuit of a purpose so important, for us delivering life-saving treatments and cures for families around the world, we must welcome and confront challenges with perseverance and a commitment to breaking down barriers that stand in the way of our destination, with the same urgency, resiliency, and bravery families bring to the fight against disease every day.
Based on your experience, what are the “5 things a person should know before they decide to start a non profit”. Please share a story or example for each.
- Purpose & Principles: Find your purpose and remain laser focused on achieving it. Let your principles be the foundational belief system for accomplishing your mission. We were founded by a group of parents, Jamie and Alex Silver and the Fullmer family, driven to set out to save their childrens’ lives by delivering treatments and cures for all families that battle EB. This permeates our culture so that every day we are relentlessly motivated by the urgency to deliver hope and healing for patients.
- Passionate People: Find a diverse and dedicated group of people who share your passion for your mission. Adopt a leadership style of servitude, supporting teams to grow personally and professionally on the path to achieving your vision. Our team puts a high emphasis on action, accountability and transparency, not being afraid to take risks that will accomplish big leaps towards our goal.
- Constituent Obsession: Seek a deep understanding of the constituents you serve, their desires, needs, and perspectives. We are powered by patients, they are our shareholders, and all actions we take should advance their goals. It is by learning and listening to the community of a cause, for us: patients, the medical community, the biotech community, and philanthropists, that enlightenment can be achieved to align the ambitions of many members of a community into one movement.
- Embrace the Obstacles: Know that at every challenge you encounter, most likely someone else has turned back. Be the one that takes an obstacle as an opportunity to climb to new heights. Be a pioneer. Make new maps. Turn the uncharted into the understood. Einstein said, “Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.”
- Build to Scale: Think hard about how what you do can be a model for continuous growth that has the capacity to far exceed your original vision. Whether it be the science that we fund, the technology platforms we build, or our business model, we challenge ourselves to think about how our initiatives can be scaled to all rare diseases.
We are very blessed that very prominent leaders read this column. Is there a person in the world who you would like to talk to, to share the idea behind your non profit? He or she might just see this, especially if we tag them. 🙂
We welcome anyone passionate about fighting and curing disease in a position to support in any way to join us in our mission. That can be making a donation, hosting an event or helping to spread awareness. However, if pressed to name a prominent philanthropist, I really admire MacKenzie Scott and the way in which she has conducted her philanthropy. Feel free to call us anytime Ms. Scott!
Can you share your favorite “Life Lesson” Quote? How is that relevant to you in your life?
Nelson Mandela said, “Do not judge me by my success, judge me by how many times I fell down and got back up again”. I believe that the fortitude to not be discouraged by failure but rather to learn and grow from it, the grit to push through challenges and not give up, and the courage to lead into the frontiers where no one else has been, are the experiences that make great leaders.
How can our readers follow you online?
EBRP Website: www.ebresearch.org
This was very meaningful, thank you so much. We wish you only continued success in your mission.
Michael Hund of EB Research Partnership: 5 Things You Need To Know To Successfully Lead A Nonprofit… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.