Phil Gattone was initially drawn to the chronic disease nonprofit space after his son was diagnosed with epilepsy in 1991 at age 4. Seeking support and wanting to help others in the same situation, he and his wife started to become active in the epilepsy community.
After receiving a master’s degree in education, Gattone spent some time doing community education at an epilepsy center in Chicago, eventually becoming CEO of the Epilepsy Foundation of Chicago and ultimately CEO of the Epilepsy Foundation of America (EFA). Thanks to Gattone’s leadership and vision, the EFA experienced record growth in community engagement, strategic partnerships, marketing, programming, and fundraising during his tenure.
In February 2024, Gattone took over as president and CEO of the National Bleeding Disorders Foundation. He shared his insights with HemAware, highlighting the pressing challenges facing the bleeding disorders community today and emphasizing how collaboration is essential to overcoming them and driving meaningful change.
Q What lessons did you learn about running a nonprofit during your tenure as CEO of the Epilepsy Foundation, and how will those lessons inform your new role at NBDF?
One thing I learned is to involve as many people as possible when you’re working to make an impact on behalf of people who live with a health condition. In my role at NBDF, I’m working with our chapter leadership, our board, local and regional boards, staff, volunteers, families, providers, advocates, and other advocacy partners to build a strategy to make the biggest impact possible. The old saying is true: “If you want to go fast, go it alone. If you want to go far, go together.”
Q What do you believe are the biggest challenges facing the nonprofit sector today, and how do you plan to address them?
The challenges for us right now include sustaining ourselves as an organization and making sure that our chapters have the resources they need to serve the families in their communities. I think the vast majority of our chapters would say that they do not have enough resources.
And the same is true nationally. We have investment opportunities in research and in awareness and advocacy. We have amazing opportunities to make a greater impact. And in order to grow, we really have to understand that and sustain our efforts. This means fundraising both at a local level and at a national level. We also need to get more people and more partnerships to attach to our mission.
Understanding the challenges that families go through is a common link across different conditions that people understand and can quickly identify with. If we can send the message to the broader public about the impact of blood and bleeding disorders, and the hope that exists, and how NBDF is uniquely positioned to meet the needs of our community, I think we’re going to find many more people, many more friends and partners, who want to help us achieve our mission.
Q How do you envision working with other national nonprofit organizations devoted to bleeding disorders?
What I’ve seen and what I’ve understood is that sometimes there can be a duplication of efforts. And I know that the people I’ve spoken with across our community broadly have expressed that same sentiment. We would all like to work together more effectively.
I was really impacted by the willingness of community partners in my previous role to work together. I would like to extend that invitation to work together more closely with our community partners because I see exponentially greater impact by doing so. We can leverage our resources, our talent, our energy, and our efforts to solve challenges together much more effectively than we can each doing it on our own.
So, to me, the power of collaboration doesn’t just exist within NBDF. My vision extends beyond NBDF to collaborate and work together with the Hemophilia Alliance, the Hemophilia Federation of America, the World Federation of Hemophilia, and other groups that are dedicated to helping people with inheritable blood and bleeding disorders improve their lives.
Q Treatments for bleeding disorders have come a long way. How will NBDF continue to advance new therapies?
My predecessor, Dr. Len Valentino, really left a legacy of advancing new therapies and research and investing in new therapies that can make a difference in a time frame that matters. With all of the work that was done under his leadership, NBDF is now positioned very well to make advancements in those areas.
There are wonderful therapies that have come forward to help people with specific bleeding disorders. Unfortunately, there are also inheritable blood and bleeding disorders for which there still are no therapies.
Q What are your thoughts on addressing the issue of health care inequities and providing access to anyone who needs treatment for a bleeding disorder?
Hearing so many diverse opinions and views has really opened my eyes to understand the gap that exists within our communities for some individuals. At NBDF, we are committed to ensuring that everybody who has a need is getting fair and equitable access to the very best care. And we have invested in that effort in terms of material resources, financial resources, and human resources.
Q What advice would you give to aspiring leaders who hope to make a significant impact in the nonprofit sector?
I would encourage anybody who is an aspiring leader and wants to make an impact to realize that there is power in your voice; there is power when you speak out. Tell your story and be proud of who you are. Keep your eyes open for opportunities to serve as a volunteer, as an advocate, because service leads to additional opportunities to get involved.
Q Is there anything else that you would like to share with the bleeding disorders community?
I just want to say to families who may have just heard the words “You have hemophilia” or “You have von Willebrand disease” or “you have a rare bleeding disorder:” When you hear those words, it can rock your world, and it can knock you down.
I want everybody to know that, from the CEO to every employee on our team, our board of directors, and our volunteers, we are with you. When you first get diagnosed, NBDF is with you. When you are struggling and you’re down and you’re not sure where to turn, you can lean on NBDF. And when you find the care that you need, and you find
success in your therapy, we’re with you to celebrate. But in the meantime, while we work for that, we will continue to advocate, educate, and innovate, and we will continue to be there with you every step of the way.