“Living with muscular dystrophy feels like you’re founding a startup. You know exactly what you want to create, and yet you can’t find one existing model on how to get there.” Today, we’re going to dive into the world of scary diagnoses and how to push your path forward.

We address:

• How do I navigate the status quo and bureaucratic considerations when starting a nonprofit?
• What realities should an aspiring entrepreneur accept before taking the leap?
• How do I stay focused on my mission as an entrepreneur in a fast-paced world filled with distractions?
• How do I effectively pivot my business amid the various effects of the pandemic?
• How can I build my brand through collaboration with others?

Karen Morales welcomes Rich Horgan, Founder and President of Cure Rare Disease. A couple of months ago, we spoke about his journey to create the first nonprofit to cure muscular dystrophy with CRISPR technology. This week, Rich announced that Cure Rare Disease formally met with the FDA for the pre-IND meeting—the meeting that comes before drug approval. CRD received positive comments regarding their studies and their proposed plan to move forward ultimately into the clinic for the first customized therapeutic.

Karen herself recalls the daily challenges of living with Limb-girdle muscular dystrophy type 2B. When she was diagnosed with the disease at age 20, she remembers receiving very little support beyond non-committal words of “encouragement” such as, “We’ll figure this out someday,” or “The science isn’t there yet.”

The medical community has made leaps and bounds in dissecting the ins-and-outs of muscular dystrophy, and yet to Karen, things are almost no different from 1998. 22 years later and there is still no cure, no drug to halt or ease symptoms, no approved lifestyle changes, exercise programs, or even any agreed upon supplements. At last, a breakthrough may be on the horizon.

Rich discusses how living with a younger brother with a super-rare and fatal form of muscular dystrophy inspired him to create his nonprofit, and how his path led him to announce that a cure for muscular dystrophy is finally in our sights.

3 MAJOR POINTS DISCUSSED

• The choice between entrepreneurship and a traditional career comes down to a few very specific moments. Consider the contract that comes your way, dictating the “reliable” salary you’re to receive week after week as long as the business continues to operate. With entrepreneurship, the salary that you get (or don’t get) is a function of your own performance—and for most people, this is a scary prospect. Entrepreneurship demands very high risk-tolerance. If you’re able to accept and prepare for that fact that episodes of failure will become the norm, and that you’ll be faced with a year’s worth of runway at the beginning of your journey, it becomes easier to take the dive.
• There’s nothing like the feeling you get once you see your vision turned to reality, when your plan is successfully executed, when your idea becomes applied. You may experience more “lows” in your career as an entrepreneur compared to a traditional employee, but on the other hand, the “highs” are likewise on a completely different level.
• Collaboration is COVID-proof. It’s hard enough in normal times to maintain our focus on our goals as an entrepreneur, much less when we go on the journey alone. As much as we want to treasure our big idea and possibly even want to keep it under wraps until we’re ready to execute, the fact of the matter is that collaboration with and support from other like-minded people always pushes our agenda forward. With Coronavirus disrupting literally every aspect of our lives, going at our entrepreneurial ventures alone simply won’t get us anywhere in the long-term. Reach out to those you can make a difference to and receive support from in return. You never know what doors they can open for you and your business.

RESOURCES

• Cure Rare Disease

Rich Horgan is the Founder and President of Cure Rare Disease. He is an entrepreneur with a particular passion for Duchenne Muscular Dystrophy (DMD) and other rare diseases, motivated by a younger brother impacted by the disease.

Rich 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.

• Connect with Rich on LinkedIn
• Follow him on Twitter

Karen Morales is founder and brand champion at Marketing Magnet.

Marketing Magnet was founded by Karen and her lean team of Fortune 500 marketing and advertising talent. We’re a world-class marketing department that has decided to take our big brand experience and direct it at the clients we want to serve: purpose-driven enterprises. Our secret sauce is our ability to focus companies on three marketing pillars to create great impact.

If you are looking for a solution to a marketing challenge, a specific project to be completed or a team to drive marketing on your behalf, we can help.

• More about Karen
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