Our Story
The Anthony G. Filippazzo Foundation, Inc. (AGF) is a 501(c)(3) nonprofit organization dedicated to raising awareness and funding critical, groundbreaking medical research into Williams Syndrome (WS), with a focused mission of advancing the discovery of effective therapeutic treatments.
For AGF Founder and Executive Director Camille A. Fortunato, Esq., that mission began at home.
Camille is an attorney, a partner at FORTUNATO & FORTUNATO, PLLC--and, most importantly to this story, Anthony's mom.
In 2011, with the birth of her second child, Anthony, changed the course of her life.
Anthony was diagnosed with williams Syndrome, a rare, complex, multi system genetic disorder caused by the deletion of approximately 26-28 genes on chromosome 7, including the hallmark gene which is elastin.
With that diagnosis came a new world of specialists, medical complexities, uncertainty—and questions.
But what Camille discovered beyond Anthony's diagnosis was equally difficult to accept: for a condition capable of affecting so much of the body, remarkably little was understood about it—and there was no approved therapy specifically targeting Williams syndrome.
For the Filippazzo family, accepting that reality was never going to be enough.
If the research wasn't there, they wanted to help make the research possible. If answers didn't yet exist, they wanted to help find them.
That determination became The Anthony G. Filippazzo Foundation.
Today, The AGF is working to bring greater attention, resources, and funding to Williams syndrome research while building relationships with physicians, scientists, researchers, families, and advocates who share the belief that rare should never mean overlooked.
Rare is real. And The AGF is committed to changing what the future of Williams syndrome can look like.
A Parent's Perspective
Who is Camille A. Fortunato?
I am the Founder and Executive Director of The Anthony G. Filippazzo Foundation, Inc. (AGF), a nonprofit organization born from our family's personal journey with Williams syndrome and our determination to change the future for individuals living with Williams syndrome.
Our lives changed forever when our son, Anthony, was born critically ill in October 2011. From the moment he entered the world, we knew something was wrong. He faced significant medical challenges, yet for more than two years, we were left searching for answers.
In November 2013, we finally had one: Anthony was diagnosed with Williams syndrome.
That diagnosis changed the direction of my life, literally
I quickly learned that Williams syndrome had been known to medicine for decades, there were still far too many unanswered questions, far too little medical research and no approved medication or therapeutic treatment specifically for the condition. I also learned that some of the most serious complications of WS involve the cardiovascular system and that individuals with WS can face increased risks during sedation and anesthesia.
As Anthony's mother, I could not simply accept that there was nothing more we could do. If the answers weren’t there, I wanted to help find them.
In 2014, I took a sabbatical from my law practice and committed myself to advocacy, awareness, fundraising, and research in partnership with the Williams Syndrome Association (WSA) . What started with a grassroots awareness walk in Battery Park in 2014 grew into a movement dedicated to giving the Williams Syndrome community something it desperately needed: hope backed by action.
Today, The Anthony G. Filippazzo Foundation is dedicated to funding and supporting research that advances our understanding of Williams syndrome and addresses the serious medical challenges faced by individuals and families affected by it. Our work supports research involving cardiac anesthesia and sudden cardiac death, cardiac arrhythmias, anxiety treatment, behavioral therapies, and education for newly diagnosed families.
Over the years, our supporters have helped us fund meaningful medical research. From our early awareness walks to major fundraising events and galas, every milestone has been driven by one purpose: to accelerate research that can improve—and potentially save—the lives of people with Williams syndrome.
In 2017, the White Night gala raised more than $1 million for groundbreaking cardiac anesthesia research. That work has already contributed to the development of life-saving anesthesia protocols for individuals with Williams Syndrome. More recently, we invested more than $600,000 in advanced cardiac research equipment supporting Dr. Mark Levin's landmark research into the molecular and cellular mechanisms behind sudden cardiac death and potential therapeutic development.
Our organization is also about bringing people together. Through our signature events, advocacy efforts, media outreach, and partnerships with researchers, physicians, families, community leaders, and supporters, we are building greater awareness of a condition that far too many people have never heard of.
In 2026, The Anthony G. Filippazzo Foundation officially launched as an independent 501(c)(3) nonprofit organization. For me, this represents an important new chapter—but our mission remains the same.
This organization exists because Anthony exists. It exists because families like mine deserve answers. It exists because children and adults with Williams syndrome deserve more research, safer medical care, better treatments, and a future filled with greater possibilities.
I started this journey as a mother trying to save my son's life. Today, I continue that fight as an advocate and nonprofit leader, committed to ensuring that no family affected by Williams syndrome has to feel that they are fighting this alone.
We are not simply raising money. We are investing in research, building awareness, supporting families, and working to change the medical future of Williams syndrome—one discovery, one family, and one life at a time.
If you are reading this, I say thank you and now please join us.
Cheers,
Camille
