Stay true to your mission: Always remember your true north. There are distractions every day that can dilute your work and take your focus away from your mission. Focus your energy and resources on the true mission.
For someone who wants to set aside money to establish a Philanthropic Foundation or Fund, what does it take to make sure your resources are being impactful and truly effective? In this interview series, called “How to Create Philanthropy That Leaves a Lasting Legacy” we are visiting with founders of Philanthropic Foundations, Charitable Organizations, and Non Profit Organizations, to talk about the steps they took to create sustainable success.
As a part of this series, I had the pleasure of interviewing Debra Miller, founder and CEO of CureDuchenne.
Debra Miller is Chief Executive Officer and Founder of CureDuchenne, a nonprofit 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 (DMD) and very little was known about the disease. At the time, there were no available treatments and no hope for a cure.
Seeing a need, Debra got to work raising money. After reaching out to scientists all over the world and logging hundreds of hours of research, CureDuchenne made initial investments into small biotech companies working to accelerate drug development towards a cure. Her investments into early-stage Duchenne research proved to be an effective catalyst for advancing promising science, then attracting additional funds to bring therapeutics through clinical trials and finally to market.
Since Debra’s tireless work began:
• CureDuchenne provided early funding to the first ever FDA-approved Duchenne drug, Exondys 51 by Sarepta Therapeutics.
• CureDuchenne funded more than 20 projects, 12 of which have advanced to clinical trials.
• Life expectancy for those living with Duchenne has increased by 10 years.
Thank you for making time to visit with us about a ‘top of mind’ topic. Our readers would like to get to know you a bit better. Can you please tell us about one or two life experiences that most shaped who you are today?
My two biggest life-changing experiences are both very personal. First off, I fell in love and married the right man. Paul is an incredible partner and we have been on quite a journey together over the last 30 years, learning from each other and growing together. The second thing that’s made me “me” was my son being diagnosed with a fatal disease, Duchenne muscular dystrophy (DMD). His diagnosis in 2003 when he was five changed my life. There was no cure, and no treatments were available, and he was not expected to live beyond 18 years of age. We were told to “go home and love your boy,” but that wasn’t an option for us.
We took that diagnosis and began to search for better care and, ultimately, a cure. Like other parents living with a child with a rare disease, we’ve been riding an emotional roller coaster since our son was diagnosed, but we approach each day with joy and hope for a cure. We are very excited about the advancements in science that we’ve seen over the last two decades, and life expectancy has increased a decade.
You are a successful leader. Which three character traits do you think were most instrumental to your success? We would love to hear a few stories or examples.
For the sake of the question, I’ll define “success” as the continued impact of CureDuchenne’s programs and the work we do. Ultimate success would be finding a cure for DMD, of course. With that said, integrity is very important to me. I may not always be right or have the answer, but I believe there are right and wrong ways to approach situations and people. At the end of the day, it’s important to me that people can trust me, and know that my focus is on finding treatments for our children with Duchenne.
I also place a high value on loyalty. I’m incredibly loyal to my friends, family and colleagues, and my commitment runs deep. Finally, I have always been very proactive, taking initiative to drive things forward and identify obstacles. I naturally strive to be in forward motion. I’m good at evaluating challenges and identifying the gaps that prevent us from reaching our goals, which I think is a critical skill for a leader of any type of organization.
What’s the most interesting discovery you’ve made since you started leading your organization?
I’ve learned so much since the very first days of CureDuchenne, when I was operating 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 team of employees with a diverse set of skills and experiences, and their expertise allows me to do what I do best- focus on the big picture vision of the organization. For example, we have an incredible team of researchers and scientists that are on the cutting edge of new discoveries, who advise on our investments that will advance a cure for Duchenne. Their expertise is invaluable, and their focus on the research allows me to build partnerships, be out in the community, and support families that need us.
Can you please 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. They don’t have treatments and their families don’t have hope. At CureDuchenne, we intend to accelerate treatments for these children and young adults and support the families as they go through this journey fighting this disease. The great news is that we’ve made significant progress since we started in 2003, and I am very optimistic about the next 5–10 years.
What makes you feel passionate about this cause more than any other?
My son Hawken is my inspiration, he is the person who fuels what I do every day. Paul and I are blessed to be his parents. He is an amazing person and has already made such a contribution to this world, and he continues to make an impact every day. I am so proud of him — he graduated from USC with a journalism degree and is now using his gifts as a writer to share his experiences with others. I’m also motivated by the many boys, young men and their families across the globe who we are 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 could extend a young person’s mobility or even their life, or talking one-on-one with a parent who is struggling with the choices that are in front of them, I will do everything I can to advocate for these families.
Without naming names, could you share a story about an individual who benefitted from your initiatives?
There have been many boys and young men with Duchenne who have benefitted from our research investments over the years. Early on, I remember there was a young boy who participated in a drug trial that CureDuchenne funded. He did very well on the therapy. Unfortunately, that drug did not get FDA approval. But, shortly thereafter, there was another therapy that we funded that became the first ever FDA approved drug to treat Duchenne, and that same patient was able to receive it. We were thrilled. He is doing well now, and his future is much brighter thanks to those treatments. Hearing his story and other hopeful stories keeps me going every day, even when it’s challenging.
We all want to help and to live a life of purpose. What are three actions anyone could take to help address the root cause of the problem you’re trying to solve?
I would advise to not just support the “cause du jour” or whatever is trending in the news — find what is meaningful to you. There are so many worthy causes that don’t get a lot of media attention since they don’t affect a large population. But I would argue that the lives of those affected by rare diseases matter just as much as the more common diseases. Secondly, I encourage everyone to look at their resources and play to their strengths. You may not have a lot of money, but you might have connections. We are all a couple of degrees of separation from someone influential, whether it be for financial or structural support, or awareness. Think of building a network and making connections. Lastly, always be humanistic. Think about what you would want others to do if your son or grandson was 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 & Effective Nonprofit That Leaves A Lasting Legacy?” Please share a story or example for each.
- Determination: it’s hard to start any business, but nonprofits have their own set of challenges. When you are fundraising and asking people for money and the return on investment is the feeling of “doing something good,” the funds are limited. Couple that with the expectation that you must operate on an 80% profit margin. You need a huge amount of determination.
- Succession plan: you should always have strong leadership in the organization that is well steeped in the mission. It’s critical for both allowing the CEO to step back and have effective big picture strategies, and for succession planning to ensure organizational stability. It gives me great peace of mind to know I have a strong team that believes in the mission alongside me.
- Self-sustaining financial model: we’ve seen several financial crises interfere with business and giving. Without a plan to be self-sustaining, you can’t ride out those financial storms.
- Clear goals and metrics for success: you have to create a plan and a system to measure success to know when you are accomplishing things and when you need to increase your goals. These can be adjusted as science, technology, etc. change.
- Stay true to your mission: Always remember your true north. There are distractions every day that can dilute your work and take your focus away from your mission. Focus your energy and resources on the true mission.
How has the pandemic changed your definition of success?
The pandemic has brought up so much emotionally, but it really has sharpened my focus on our culture as an organization and as a team. We are much stronger now than before, and I’ve gained a clarity in identifying exactly what qualities our team needs to be successful in working together to achieve our goals. And, we’ve seen how fast we can move science and treatments when there is a collective societal will to work together.
How do you get inspired after an inevitable setback?
In dealing with critical illness, there are always setbacks and many dark days. In the darkest times, I go through a mental exercise where I imagine walking away from this mission. I allow myself a space to think about what I would be doing if I wasn’t doing this. And I always come back to the same goal: I want to find a cure for my son, and I want to help the incredible families that I’ve met on this journey. And how do I reach that goal? I’d run an organization that aims to cure Duchenne. So, in the end, I feel so grateful to be right where I am.
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, she, or they might just see this, especially if we tag them. 🙂
Yes, please, tag away! Making connections is so important. Frankly, anyone who I can reach with my message is one more person who I welcome to our cause. I’d love to connect with someone like Elon Musk who thinks big and literally sees the sky as the limit. Just a little bit of his mental and financial resources could 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 follow your progress online?
If your readers want to learn more about what we are 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. We wish you continued success with your mission.