You need to be laser focused on your mission. In 2008, when the CMTA launched our Strategy to Accelerate Research, no pharmaceutical or biotech companies were developing treatments for CMT. By remaining focused on the steps we needed to take to change that, I have worked with our team to recruit more than 40 leading research labs, pharmaceutical and biotech companies to the space over the past five years and have companies in clinical trials.
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 Amy Gray.
Amy Gray is the Chief Executive Officer of the Charcot-Marie-Tooth Association (CMTA), the largest philanthropic funder of research for Charcot-Marie-Tooth disease. Ms. Gray has more than 20 years of experience working in philanthropy in the health care sector, holding leadership positions at the Muscular Dystrophy Association, Crohn’s and Colitis Foundation and Parkinson’s Foundation. For the past five years, she has been instrumental in growing the CMTA’s capacity to accelerate research and providing critical support to patients and families living with CMT.
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?
Growing up, my family volunteered and supported local charities in our community. I started “fundraising” at a young age, participating in my Catholic school’s magazine drive, going door to door selling magazine subscriptions as a fundraiser. I never imagined going into philanthropy as a career; I didn’t even know it was an option when I graduated college but am so thankful the stars have aligned in this way.
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.
I believe integrity is at the core of every great leader. Being trustworthy, especially in philanthropy, is very important. You need to earn the trust of your staff, board, community members and donors to be successful.
I also believe great leaders learn what they are good at and what they are not good at and surround themselves with teammates that complement their weaknesses. This is something I am still working on; however, it has been instrumental in my professional growth!
Great leaders work with their teams to innovate and make the most of the resources they have. The CMTA was just awarded a Perfect 100 score by Charity Navigator for our excellence in financial accountability and governance. Less than 1 percent of nonprofit organizations that are rated by Charity Navigator receive this designation, so it is a very big deal and something I am extremely proud of!
What’s the most interesting discovery you’ve made since you started leading your organization?
The rare disease community is incredible! The involvement of CMT patients, family members and caregivers fuel our organization. By engaging the community as volunteers and ambassadors, the CMTA has been able to operate like a 20 million dollars organization on the budget of a 5 million dollars organization, ensuring that we can direct 90 cents per dollar raised to fund our mission.
Can you please tell our readers more about how you or your organization intends to make a significant social impact?
Charcot-Marie-Tooth (CMT) is a degenerative neuromuscular disease that damages the long nerves to the hands and feet, causing the surrounding muscles to atrophy. Some 3 million people worldwide are affected. As the largest charitable funder of CMT research, we are working towards a world without CMT. Through our Strategy to Accelerate Research (STAR), the CMTA is currently partnering with more than 40 of the leading research labs, and biotech and pharmaceutical companies to develop treatments and a cure.
What makes you feel passionate about this cause more than any other?
The CMT community as a whole, especially our Youth Council. The Youth Council is connecting youth living with CMT around the globe, something incredibly important with a rare disease like CMT. Many youth have never met anyone outside of their family with CMT. They are now making lasting friendships through the CMTA’s youth programs, including Camp Footprint, the only camp in the United States just for kids with CMT.
Without naming names, could you share a story about an individual who benefitted from your initiatives?
Every summer, we hold a six-day sleepaway camp for youth (ages 10–18) with CMT. The CMTA’s Camp Footprint is the only camp in the United States just for kids with CMT. Camp Footprint envisions a world where children with CMT are empowered with the courage, hope, skills, and community for a lifelong journey of realizing potential and developing strengths. We have averaged around 100 kids and 50 volunteer counselors the past couple years. There are so many stories of kids attending camp for the first time never having met another kid with CMT and coming out of camp with lifelong friendships!
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?
- Volunteer your time and talents.
- Spread awareness through social media. Like our pages and engage with our content!
- Donate! We are the only 4 STAR rated CMT charity rated by Charity Navigator, recently earning a Perfect 100 score for our excellence in financial accountability and governance practices!
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.
You need to be laser focused on your mission. In 2008, when the CMTA launched our Strategy to Accelerate Research, no pharmaceutical or biotech companies were developing treatments for CMT. By remaining focused on the steps we needed to take to change that, I have worked with our team to recruit more than 40 leading research labs, pharmaceutical and biotech companies to the space over the past five years and have companies in clinical trials.
You also need to attract talent and leadership who are passionate about your mission. Almost everyone on our team has a personal connection to CMT, and as I have recruited new staff over the past five years I have looked for that same level of commitment and dedication in candidates. I can say this is the most dedicated group of people I have ever worked with over the years. Our board of directors provides incredible leadership, raising more than 25 percent of our annual fundraising revenues and engaging in strategic business discussions that drive our mission. I have worked closely with the board chair to recruit new members to our board that will have a high impact on our mission and fundraising efforts.
You need to be good at connecting with your community and telling your story. I have worked with our team to build a robust marketing and communications plan to share the impact our organization is making with the community. I have found this has been critical to engage community members so that they feel a part of the organization and have a sense of ownership in the mission.
You also need to be very efficient with your resources. Donors expect it, and they should. I have worked closely with our board and team to develop excellence in our operational efficiencies. More than 90 cents of every dollar we raise at the CMTA goes directly to support our mission and we are spending more of every dollar on CMT research than any other organization. This is one of the key reasons we were awarded a 4 STAR rating by Charity Navigator and a Perfect 100 score!
You need to be nimble and to innovate. The CMTA was able to pivot quickly in 2020 during the pandemic because we are an agile organization that can respond quickly to new developments. We also were able to roll out new programs to reach community members thanks to the creativity and innovation within our team.
How has the pandemic changed your definition of success?
The pandemic hasn’t changed our definition of success; however, it has provided more opportunities to connect with members of our community online and virtually, something people are much more accustomed to now.
How do you get inspired after an inevitable setback?
I have a wall of CMT community member photos in my office. The wall of photos reminds me every day why we are striving so hard to develop treatments and a cure for CMT.
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. 🙂
Patrick Lencioni, a leadership and teamwork author, is someone who has inspired my leadership style. Please tag him!
You’re doing important work. How can our readers follow your progress online?
You can connect with the CMTA via our website at www.cmtausa.org!
Thank you for a meaningful conversation. We wish you continued success with your mission.