Debra Miller On How To Leave a Lasting Legacy With a Successful & Effective Nonprofit Organization

Debra Miller on how to leave a lasting legacy with a successful and effective nonprofit

 

Debra Miller on how to leave a lasting legacy with a successful and effective nonprofit

Stay true to your mission: Always remember your true North. There are distractions every day that can dilute your work and take away your focus from your task. Focus your energy and resources on the real task. For someone who wants to spend money to set up a Charitable Foundation or Foundation, what needs to be done [...]

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Stay true to your mission: Always remember your true North. There are distractions every day that can dilute your work and take away your focus from your task. Focus your energy and resources on the real task.

For someone who wants to spend money to set up a Charitable Foundation or Foundation, what should be done to make sure your resources have an impact and are really effective? In this series of interviews, called "How to Create Philanthropy That Leaves a Lasting Legacy," we're visiting the founders of charities, charities, and nonprofits, to talk about the steps they've taken to create sustainable success.

As part of this series, I had the pleasure of interviewing Debra Miller, founder and CEO of CureDuchenne.

Debra Miller is the CEO and founder of CureDuchenne, a non-profit organization dedicated to finding and funding a cure for Duchenne muscular dystrophy. She founded CureDuchenne in 2003 after her only son, Hawken, was diagnosed with Duchenne's Disease (DMD) and little is known about the disease. At the time, there were no treatments available and there was no hope of a cure.

 Realizing the need, Debra had to work to make money. After reaching out to scientists around the world and documenting hundreds of hours of research, CureDuchenne has made initial investments in small biotech companies that are working to accelerate drug development toward a cure. Her investments in early-stage Duchenne research proved to be an effective catalyst to advance promising science, then attract more money to bring treatments through clinical trials and eventually to market.

Since Debra's tireless work began:
• CureDuchenne has funded the first FDA-approved Duchenne drug, Exondys 51 of Sarepta Therapeutics.
 CureDuchenne has funded more than 20 projects, 12 of which have progressed to clinical trials.
 The life expectancy of people living with Duchenne has increased by 10 years.

Thank you for taking the time to visit us on a 'top of the mind' topic. Our readers want to get to know you a little better. Can you tell us about one or two life experiences that have shaped who you are most today?

My two biggest life-changing experiences were both very personal. First of all, I fell in love and married the right man. Paul is an incredible partner and we've had a pretty good journey together over the last 30 years, learning from each other and growing together. The second thing that made me "me" was that my son was diagnosed with a fatal disease, Duchenne Muscular Dystrophy (DMD). His diagnosis in 2003 when he was five changed my life. There is no cure, and no treatments are available, and he is not expected to live beyond the age of 18. We were asked to "go home and love your son," but that was not an option for us.

We made that diagnosis and started looking for better care and eventually treatment. Like other parents who live with a child with a rare disease, we've been riding an emotional rollercoaster since our son was diagnosed, but we approach every day with joy and hope for a cure. We are excited about the advances in science that we have seen over the past two decades and that life expectancy has increased by a decade.

You are a successful leader. What are the three personality traits you think are the most instrumental to your success? We would love to hear a few stories or examples.

For the sake of the question, I would define "success" as the ongoing impact of CureDuchenne's programs and the work we do. The ultimate success will be to find a cure for DMD, of course. Like I said, integrity is very important to me. I may not always be right or have answers, but I believe there are right and wrong ways to approach situations and people. At the end of the day, it's important for me that people can trust me and know that my focus is on finding treatments for our children with Duchenne.

I also appreciate loyalty. I am extremely loyal to my friends, family and colleagues, and my commitment is deep. Finally, I'm always very proactive, proactively moving things forward and identifying obstacles. I naturally try to be moving forward. I'm very good at assessing challenges and identifying the gaps that prevent us from achieving our goals, which I think is an important skill for a leader of any kind of organization.

What's the most exciting discovery you've made since you started leading your organization?

I learned a lot from the early days of CureDuchenne, when I ran the organization out of my son's playroom. I've learned the importance of having the right people on the team. We have an incredible staff with a diverse set of skills and experience, and their expertise allows me to do what I do best – focusing on the organization's big picture vision. For example, we have an incredible team of researchers and scientists who are on the cusp of new discoveries who advise on our investments that will drive Duchenne's cure. Their expertise is invaluable, and their focus on research allows me to build partnerships, go out into the community, and support families who need us.

Can you tell our readers more about how you or your organization intends to make a significant social impact?

Our vision is our name... to cure Duchenne muscular dystrophy. Every year, thousands of young children are diagnosed with Duchenne's disease. They have no treatment and their families have no hope. At CureDuchenne, we plan to accelerate treatments for these children and young adults and support families as they go through their journey to fight the disease. The great news is that we have made significant progress since we started in 2003 and I am very optimistic about the next 5-10 years.

What makes you feel more passionate about this cause than any other cause?

My son Hawken is my inspiration, he's the one who drives what I do every day. Paul and I were lucky to be his parents. He is a great person and has contributed as such to this world, and he continues to make an impact every day. I'm very proud of him - he graduated from USC with a degree in journalism and is now using his gifts as a writer to share his experiences with others. I'm also motivated by many of the boys, young people and their families across the globe who we're trying to help. I feel a great sense of responsibility to do everything in my power to help these lovely families. Whether it's investing in a promising therapy that can expand a young person's mobility or even their life, or talking directly to parents who are struggling with the choices in front of them, I'll do everything I can to advocate for these families.

Without naming, can you share a story about an individual who benefited from your initiatives?

There have been a lot of boys and young people with Duchenne who have benefited from our research investments over the years. From the beginning, I remember a boy who participated in a drug trial that CureDuchenne funded. He did a great job in the treatment. Unfortunately, that drug did not receive FDA approval. But, soon after, there was another therapy that we funded that became the first drug approved by the FDA to treat Duchenne, and it was that patient who was able to receive it. We're delighted. Now he's doing well, and his future is much brighter thanks to those treatments. Hearing his story and other hopeful stories keeps me going every day, even if it's challenging.

We all want to help and live a purposeful life. What are the three actions that anyone can take to help solve the root cause of the problem you are trying to solve?

I recommend not only supporting "du jour cause" or whatever is trending in the news - look for what makes sense to you. There are many reasons that deserve not to receive much media attention because they do not affect the large population. But I would argue that the lives of those affected by rare diseases are just as important as more common diseases. Second, I encourage people to look at their resources and leverage their strengths. You may not have a lot of money, but you may have connections. We all have a few degrees of separation from an influencer, whether it's financial or structural support, or perception. Think about building a network and creating connections. Finally, always humane. Think about what you want others to do if your son or nephew is diagnosed with a deadly disease. That's when you'll understand what you can do to help.

Based on your experience, "What are the 5 things you need to create a successful and effective nonprofit that leaves a lasting legacy?" Please share a story or example for each person.

1. Determination: it's hard to start any business, but nonprofits have their own challenges. When you raise money and ask people for money and return on investment is the feeling of "doing something good," the fund is limited. Combine that with the expectation that you have to operate at an 80% profit margin. You need a great determination.
2. Succession plan: you must always have strong leadership in the organization that is immersed in the task. It is important that both allow the CEO to step back and have effective big picture strategies, and plan succession to ensure the stability of the organization. It gives me great peace of mind knowing I have a strong team that believes in the task next to me.
3. The financial model is self-sustaining: we have seen a number of financial crises interfere with business and give away. Without a self-sustaining plan, you can't weather those financial storms.
4. Clear goals and metrics for success: you have to create a plan and a system to measure success to know when you're getting things done and when you need to increase your goals. They can be adapted as science, technology, etc. change.
5. Stay true to your mission: Always remember your true North. There are distractions every day that can dilute your work and take away your focus from your task. Focus your energy and resources on the real task.

How has the pandemic changed your definition of success?

The pandemic has brought a lot of emotions, but it has really sharpened my focus on our culture as an organization and as a team. We are now much stronger than we used to be and I have gained clarity in identifying exactly what qualities our team needs to succeed in working together to achieve our goals. And, we've seen how quickly we can move science and treatments when there's a collective social will to work together.

How do you get inspired after an inevitable failure?

In dealing with a serious illness, there are always failures and many dark days. In the darkest of times, I underwent a mental exercise where I imagined leaving this task. I allow myself a space to think about what I would do if I didn't do this. And I always come back with the same goal: I want to find a cure for my son, and I want to help the incredible families I've met on this journey. And how to achieve that goal? I'm going to run an organization that's going to cure Duchenne. So in the end, I feel very grateful to be where I am.

We are very lucky that very famous leaders read this article. Is there someone in the world you want to talk to, to share the ideas behind your nonprofit? He, she, or they may just see this, especially if we tag them. 🙂

Yes, please, tag it! Creating connections is very important. To be honest, anyone I can reach out to with my message is another person with whom I welcome our career. I'd love to connect with someone like Elon Musk who thinks big and really sees the sky as the limit. Just a little of his mental and financial resources can cure a disease that has been with us forever, but that can be cured for generations to come.

You're doing important work. How can our readers track your progress online?

If your readers want to learn more about what we're doing, I encourage them to check us out and sign up for updates on our progress at www.cureduchenne.org.

Thank you for a meaningful conversation. I wish you continued success with your mission.

 

 

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