A Social Mission At HBS: Why We Ought To Pay Attention To Terry’s Foundation

Pippa Lamb, Editor-in-Chief

How the mission of one EC student sets an example for us all

Why did you come to HBS? To switch careers, build your resume, or simply to push yourself outside of your comfort zone?

For Rich Horgan (HBS ‘18) the answer is more complex:  to further his goal of advancing research to commercialize treatments for patients with Duchenne’s muscular dystrophy (DMD), a degenerative muscle wasting disease whose variation primarily impacts boys and men.

Rich’s younger brother, Terry, happens to be one of them.

For that reason, Rich spent his past RC/EC summer setting up Terry’s Foundation, a 501(c)(3) non-profit entity founded with the sole purpose to end muscular dystrophy. The foundation realizes this mission by raising awareness for the disease and by supporting the ground-breaking research efforts to find a cure for this disease, and ultimately bring it to market.

To better understand Terry’s Foundation, I sat down with Rich to talk about his motivations, the goals of the foundation, and what it’s like to be a Social Enterprise founder at Harvard Business School.

1) What inspired you to create Terry’s Foundation?

Terry (left) and his older brother Rich (right)

Coming to HBS, I wanted to use the opportunity to push research forward to commercialize treatments for patients with Duchenne’s muscular dystrophy (DMD)– a degenerative muscle wasting disease whose variation impacts primarily boys and men. With my younger brother, Terry, living with Duchenne’s muscular dystrophy, I felt that I needed to do something to force treatments for the rare disease to reach patients faster because time is the biggest enemy with this disease. Growing up with my brother having the disease, you feel so powerless and helpless. Eventually, you just get so tired of feeling like you can’t do anything and you take that hopelessness and anger and direct is somewhere useful to make a difference. This is that. So I created Terry’s Foundation for Muscular Dystrophy in hopes of jump-starting promising academic research. Typically, academic research progresses slowly due to a lack of funds but with a small amount of capital, (<$100,000), a huge amount of progress can be made in identifying approaches and push the research to a point that a company would license it and raise funding.  

2) What are the specific goals of the foundation, and how has your progress been to date?

The goal of the foundation is support promising early-stage academic research in hopes of translating the research into treatments more quickly than conventional methods. The foundation is hosting a gala on December 4th to do just that – bring together a group of people to raise a significant amount of capital which will be directly infused into a highly promising research effort at Boston Children’s Hospital in the Kunkel Lab. The Kunkel lab targets its research on advancing innovative approaches to treating Duchenne’s muscular dystrophy. The capital generated from the gala will support a promising approach to treatment called cell therapy.

With this approach, healthy muscle progenitor cells would be injected into the patient. These cells would be programmed to find their way to a targeted muscle site – engraftment – where they would fuse and enable muscle restoration as pictured below. The magic is finding switches that would enable engraftment and fusion as it’s been a mystery for decades. However, with the advancement in screening technologies, we’re able to rapidly screen promising candidates quicker than before. Once the lab has identified and confirmed a list of candidates and conducted testing in mice with DMD, the findings would transition into a startup that would be responsible for carrying the work from preclinical stages to commercialization and FDA approval. Of course, this will require an established biotech/pharma company to partner with to provide the capital for a clinical trial.

3) What part has HBS played in your journey with Terry’s Foundation for Muscular Dystrophy so far?

HBS has been an incredible catalyst to the development of the technology. HBS has allowed me to connect with thought leaders in the industry to get advice and guidance as the research progresses towards licensing and commercialization.

Although the foundation is the first step in accelerating the cell therapy research, there is much more work beyond that. Once the research in the academic setting is complete, the team and I will seek to license and push commercialization forward through a startup. HBS will play a large role there as well. Through opportunities such as the Blavatnik Fellowship, seed capital and industry connections are offered to help catalyze research in the life sciences. I intend to pursue this to help position the newly forming company for the best chance of success. At the end of the day, my mission and purpose is to see that an effective treatment is commercialized so that children and adults suffering from this terrible disease can have hope for a better life, including my brother.

4) And vice versa, how has your dedication to your non-profit mission impacted your time at HBS?

My time at HBS has been great. Pursuing my goal of commercializing an effective treatment for DMD has offered me the opportunity to meet amazing faculty, industry leaders and students who are striving to make a difference in the world. Growing up with a brother who has DMD has shifted my life completely and when I was a child I would have never expected to be where I am. I’m grateful to be given the chance to try and change the outcome for this disease and I hope to continue to meet and work with others who are motivated by the same principles. The same principles to truly have an impact on the world and the people who hope for a day when they’ll no longer have to fear losing their brother, son or loved ones to this disease.

5) How has your path to entrepreneurship experience compared to your fellow-HBS founders who are pursuing non-therapeutic startups? Have you found any differences in the day to day? How about how applicable lessons learnt in the classroom have been?

My foundation will act to catalyze the academic research to enable a faster path to licensing the research to the startup. Once licensed from the institution (Boston Children’s), our startup will raise capital and move into preclinical work in preparation for human trials. In contrast to startups not focused in the biotech space, the company that I’m forming to license the technology will be far more capital intensive. Our pre-revenue window is much longer than a software startup, for example, given that preclinical work and human trials will take several years (>5). This means we will have to forge partnerships with VCs and biotech/pharmaceutical leaders who know the space well and can appreciate the longer duration to revenue. However, we benefit from the fact that DMD is a rare disease which will help trials move quicker due to smaller patient populations. At the end of the day, the goal is to get this effort to help patients despite the hurdles that lay between now and that point.

Classes such as entrepreneurial finance and founder’s journey are really helpful because they help to frame the issues we are facing now and into the future such as founder’s agreements and raising capital. They are highly relevant.

6) What has been the toughest part of your mission so far? And the most rewarding? (Latter question seems a bit silly considering the whole mission is rewarding but feel free to include something if you’d like).

The toughest part of the mission so far is feeling as though I’m not making progress fast enough. This is very much a race against time and that’s what I hope to accomplish by starting this foundation – to accelerate promising research for DMD so that it can reach patients quicker than through traditional methods.

Reversely, the most rewarding aspect will be to see the research licensed into a startup and more importantly, the day where the first patients receive an effective treatment so families no longer have to fear this awful disease. I started out on this path to save my brother. The road ahead is very long but I won’t stop until this disease has been eliminated. If I had the chance to give my life so that brother wouldn’t have to face this disease, I’d do so in a heartbeat but that isn’t possible and so we have to fight on.

7) What advice would you give to other HBS students also looking to pursue a non profit opportunity like this, or start up one of their own?

I’m very new to non-profits so I’m certainly not an expert but I’ve learned a lot about running a non-profit from people far smarter than I am. One of the most important lessons I’ve learned is that you can’t do it on your own, that you need to have a team who you can count on to make a far greater impact than any individual. It’s important to involve your network and be clear about your intentions. The little experience that I have so far makes me see that you have to be determined to succeed. People want to be a part of something that can make a positive change in the world and I try to capture that for my foundation. A great mentor of mine and alum of HBS, Brad Margus, is fighting for his two sons who have ataxia-telangiectasia, or A-T, a rare progressive and eventually fatal neurological disease, and is an example and beacon to me as I begin my journey. It’s helpful to have a mentor who is fighting his or her own battle and one that you can learn from.

8) Do you have any ideas on how HBS as a school could encourage non-profit / social impact entrepreneurship?

It’s scary starting out on a path to try and effect change for a tough disease and in all likelihood, this will fail. Regardless of the odds, it’s a mission that must happen because there are lives at stake. Institutions such as HBS can help, and have a responsibility, to enable more people to pursue life-changing ventures in several ways. I think the most relevant is to encourage cross-school collaboration. Currently, there isn’t a well-established path to connect with med students or engineering students either at Harvard or beyond. And without world-class researchers or engineers, success can’t be realized. Secondly, I think programs such as the Blavatnik Fellowship are great and there should be more programs like them for different fields which would allow students to take a risk with support from Harvard.

7) Lastly, how can we help? In the immediate term and medium-long term?

The foundation is hosting a gala on December 4th from 6PM-10PM at the Knafel Center to help raise $50,000 for the Kunkel Lab. It’d be a great help to encourage people to attend the gala and encourage local businesses to support it as well through donations. It’s amazing what a group of dedicated people can accomplish and this is truly an opportunity to directly affect the outcome of a disease here and now. Together, we can say ‘no we’re going to stop this disease, we’re done losing brothers, sons and children to it and we’re going to going to find a treatment in years not decades’ and we can stop this disease from forever impacting families across from US and the globe. Nowadays, it’s rare to have an opportunity to truly be a part of something that can make a tangible difference within our lives. Although this gala is just the beginning, it’s a stake in the ground to begin this journey to end DMD.

If you’re interested in learning more about Duchenne’s muscular dystrophy, feel free to visit the foundation’s website at https://www.terrysfoundationformd.org/. If you’re interested in attending our gala, please visit our Event Brite page at https://terryswintergala.eventbrite.com.

Beyond the gala, I’d encourage people to reach out and talk about this disease. It’s one that impacts tens of thousands of people in the US and abroad. I’m confident that within my lifetime, society can beat this. I think that a lot of resources are not aligned in their work and this causes a lot of time to be wasted. We have to work together in this fight, not only in word but in action, to end DMD. I’m happy to speak more with people about Duchenne, the research or other questions they may have.

About the interviewee: Rich Horgan (HBS’18) is originally from Watkins Glen, NY and attended Cornell University. Prior to Harvard, he worked in new business development in Corning, NY.


Pippa Lamb (MBA ‘18) worked for the British government in Beijing and Shanghai before transitioning to J.P. Morgan in London and Hong Kong. Pippa is a Fulbright Scholar under the British Friends of Harvard Business School Program.