Decent Humans is what we call the incredible community we witness on CrowdRise each and every day doing amazing things for good. And each month, we’re going to highlight a Decent Human in the nonprofit world that’s devoting their time and passion to giving back and making a difference. We hope that by sharing their stories of aid, altruism, and passion, others will be inspired to make an even greater impact on the world we live in.
This month we had the chance to talk to Michael Hund, the Executive Director of EB Research Partnership. We learned how an experience at 18 set him on a path that would change his life, why long meetings are overrated, and how traditional business practices can go a long way in the nonprofit world.
When Michael was just 18, he was living on a cattle ranch in rural Kansas. That summer he heard about a camp in the woods of Connecticut called the Hole in the Wall Gang camp. Founded by actor, philanthropist, and businessman Paul Newman, the camp was designed to provide a fun and pure childhood experience to seriously ill children. And with that, Michael was sold.
He jumped in his truck, drove from Kansas to Connecticut, and the course of his life was forever changed. He knew that, from that summer on, he wanted to be involved in contributing to solving the problem of disease. He worked for Hole in the Wall Gang for a decade before moving on to a Myeloma cancer research organization and, at the beginning of this year, landing at EB Research Partnership.On the mission of EB Research Partnership
EB, or Epidermolysis Bullosa, is a group of life-threatening skin disorders that affect children from birth. It’s a rare genetic disease that affects 30,000 people in the US, and 500,000 people worldwide. Since EB attacks the largest organ in the body, the skin, it is a devastating disease that affects the body inside and out. Individuals lack a critical protein that binds the layers of skin together causing the skin to tear apart, blister and sheer off, leading to severe pain, disfigurement, and wounds that never heal.
Our goal is to not only fund research to find a cure for EB, but to also take into account that EB is one of the 7,000 rare diseases in the world that impacts 10% of the population. And, with that, we see ourselves as first off the runway to show that our model can impact thousands of other diseases that affect such a big part of the population.
On their small, yet mighty, team
I think the thing that surprises people oftentimes is how lean of an organization we are. We’ve accomplished so much with a modest but mighty team, I always say we punch above our weight class. We're so agile and efficient... it's myself and one other full-time staff member, two part-time employees, and a very active board. The ability to leverage cutting-edge technology helps us focus our time and energy. We see our primary responsibility to donors and patients, and because of that, we want to maximize each individual's effort to create the highest impact and outcomes for patients as we rapidly accelerate treatments and cures.
On how traditional business models fit into their nonprofit structure
When I worked at the Myeloma cancer research nonprofit, the founder took a very straightforward business approach to the organization. The only semblance of a traditional nonprofit we saw was our 501c3 status. In every other way, we operated like a business using innovation, big data, collaboration, management, and results-driven business practices to run a cancer research organization. I saw how successful these practices were with that nonprofit. We were able to lead 10 approved treatments when there were previously none, and most importantly, triple life expectancy for patients. So when I went on to get my MBA, I started thinking about how different business models can apply to disease research.
On venture philanthropyAt EB Research Partnership, we leverage an innovative venture philanthropy business model. Venture philanthropy is when you take venture capital principles and apply them to disease research. When we make a grant to a project, we retain the added upside of generating a recurring donation stream if the therapy or product is commercially successful. We then use this revenue return to fund additional EB research, and will not stop until a cure is achieved.
We directly disrupt the old model by giving the patients and donors that support us a seat at the table by investing in projects that can result in a meaningful therapy or a potential cure in the next 3-5 years, and also negotiating a share of the intellectual property. When this research becomes commercialized, we share in the returns with healthcare companies and, instead of going to executives or shareholders, our returns go right back into research until we find a cure for EB - and into the hands of our shareholders: patients. This also creates a more sustainable business model in which we now have a revenue stream coming from outside of traditional methods. Not only is 90% of every dollar raised going directly to research, but, additionally, has the potential to fund multiples of the original donation.
On the number one reason he gets up in the morning
I get up and go to work every day knowing that my hard work and my energy and my efforts and my skills every hour and every minute that I put into work at this organization is an opportunity to benefit patients who battle this disease every day. EB is a devastating and life-threatening disease and also rare, so it is up to us to drive meaningful change and progress for patients. So if it's a long day or it's challenging, what keeps me going and keeps me motivated to get up everyday is knowing that our work has the ability to improve lives of EB patients around the world. And not only impacting the lives of families battling EB everyday in a positive way, but it's realistic that we can cure this disease and pioneer a new model for other rare diseases.
On his love for smoothies
I'm a big smoothie junkie, so I love smoothies to start my day. My ace in the hole is peanut butter, I can't get enough if it. I guess I’m not much different than man’s best friend, because dogs love peanut butter. So I like combining anything with peanut butter, like fresh fruit, berries, bananas, and throw in some spinach and Kale in there. And then, particularly if I'm making them for someone else, a little chocolate never hurts either.
On his brand new office space
We are in a WeWork space, which I'd highly recommend to other nonprofits. They give a nonprofit discount. And the great thing about this space is it's colorful, it's bright, it's modern, it's innovative. It's a really inspiring and motivating office to be in. We have our own private offices where each of us work. But then there's also a community built-in with collaborative workspaces, so if you pop out to get a coffee, you can talk to somebody that has an ability to benefit your mission and vice versa.
On big data and collaboration and all that fun stuff
We’re big believers in putting speed in the system. Part of it is rooted in our venture philanthropy model where we take donor investments and we maximize those to generate future revenue. We've also formed a collaborative consortium of 21 leading academic medical centers and we've inspired and incentivized those medical centers to work together, which is really rare for universities and hospitals. But when you do that, when you have collaborative approaches, you see the process move so much faster.
We're also big believers in the power of big data. We've built a dataset which holds over 700 EB patients. And that's been a result of the collaboration among that 21 center medical consortium. Everybody working together. In order to tackle the largest problems in the world, such as curing disease, we believe key components are data-sharing and collaboration to drive results. Essentially, it’s inherent in our name... EB Research Partnership, right? We believe that, as many people we can bring together to partner with us, the faster we will accelerate treatments and cures.
On a few hacks that makes his life a little bit easier
Oh yeah, I have a few. The Google Suite, like the Gmail Suite, we use Google for all aspects of our business. So that's a great hack for a lot of reasons. We use it for marketplace and we use it for email and Google Drive. Being able to collaborate and look at the same document is one of the biggest hacks, apps, programs that we use all the time.
We also got the Google Grant for the $10,000 a month. So we use that. The fact that everything's in one place and connected to the Google Suite is a huge productivity hack. So we love that.We also don't believe in long meetings. So super quick check-ins and quick meetings I think is another way to just be productive and not be bogged down in an hour long meeting. We usually have a weekly meeting and then just run with it the rest of the week and collaborate.
On what he wants people to know about EB Research Partnership
We're driven and we're out to cure this disease and put ourselves out of jobs. And we believe that, via big data, collaboration, and driving results to the hands of patients, that is how we do it. And the venture philanthropy model is a big piece that sustains our mission and it makes it a little more innovative than other other research organizations in the space.
Wow. We’re super impressed. Your approach to research funding research and dedication to a cure is so inspiring. We’re glad that 50% of your full-time employees took the time out of their day to talk to us. It’s interviews like this that help nonprofits get inspired, realize they’re not alone, and that we’re all out there trying to make a difference wherever we can.
To learn more about EB Research Partnership, please Click Here.