Life was as good as it gets for Philip Gattone, until early one April morning, things took a turn for the worse.
“We had it all, my wife, Jill, and I. It was April 1991. Our third son, Jonathan, had just been born. Our second son Michael was two.”
Gattone’s oldest son Philip Jr. was, by all indications, a healthy 4-year old at the time.
As Gattone proceeds to tell the story he’s told many times before, he finds that after 27 years, he still gets choked up.
At 4 a.m., they found Philip Jr. lying on his back on his bedroom floor. His mouth was blue, his skin ashen. Although his eyes were open and twitching from side to side, his appearance was so shocking, they feared the worst.
“We thought we had found him dead.”
Gattone remembers standing in his front yard begging the paramedics to just tell him his son was alive, their inability to stop the child’s profound seizure, and in the emergency room watching as his son was rolled by in respiratory arrest from the medications.
“The doctor told us that 1 in 10 people will have a seizure sometime in their life and never have another one,” Gattone said. “Unfortunately, this was not the case for Phil Jr.”
A rare form of epilepsy took over Philip Jr. with daily seizures that didn’t respond to treatment. “Most came in small clusters, lasting 15 or 20 seconds, but there were hundreds a day. Sometimes he would lose consciousness and go into convulsions.” He would have to relearn, over and over again, the cognitive abilities he’d lost as a result of the seizures.
“We struggled for years with drugs and dosages. We connected with an epilepsy center near us in Chicago. In ’93 and ’94, Phil had surgeries to re-section part of the right side of his brain. That bought him some time. But that was the end of the treatment road in that respect.”
They eventually found one drug that was the key to a great degree of success in combination with other medications and therapy. The catch was that the drug was only available outside of the United States. Without approval to be sold in the U.S., insurance would not cover the medication. The Gattones’ were spending thousands of dollars a month for it. The only remedy was to obtain approval from the U.S. Food and Drug Administration (FDA) for the drug to be produced here in the U.S.
It was an orphan drug—one with very small demand.
“There were so many hurdles. Most drug companies made the business decision not to pursue it.”
Except for one. This sort of dire need was exactly why Jeff Aronin had started Ovation Pharmaceuticals.
“Jeff pursued U.S. FDA approval, where other drug companies didn’t want to take a chance on. His courageous work changed thousands of lives. He’s an amazing leader, and at the same time, just a normal guy. In Chicago, he’d say, ‘Come by for a cup of coffee’.”
Gattone called Aronin’s approach a partnership, describing him as one of the few people who doesn’t just recognize a need, but takes action and motivates others to do the same (Bloomberg.com).
“Jeff understands business like very few do. He could lead anywhere. He’s chosen to make his career addressing the needs of rare disease communities. He gives all the time, like serving on the Epilepsy Foundation board of directors or investing revenue back into the community.”
At about the same time, Gattone said he was so transformed by what had happened with his son, he changed his career path, moved away from the private sector, and threw his hat in the ring when the CEO of the Epilepsy Foundation of Greater Chicago retired. He calls himself fortunate to have been accepted. In 2012, Gattone took over the Epilepsy Foundation’s national office in Washington D.C.
By then, Aronin had sold Ovation Pharmaceuticals, using the sale as a means to start a new company focused on unmet medical needs. Jeff Aronin eventually founded Paragon Biosciences, an incubator and investor for biotechnology companies developing life-changing treatments, where he currently serves as company CEO.
What Gattone realized about Aronin’s business approach was that it is a vital in-between; an effort for the greater good with a business model that could accomplish the things a non-profit could not. As a result of partnering with Aronin, the Epilepsy Foundation was able to realign its goals, Gattone said.
“We are all trying to find therapies to stop seizures and save lives. What Jeff did within the community made us more equipped to help with really impactful resources, and we can focus our efforts there.”
As the son of famed jazz pianist Joseph Gattone, music analogies come naturally, and Phil has the perfect one to describe Aronin’s ability to see the broader picture, without missing the details.
“Jeff thinks in chords and harmonies, not just a melody.”
Gattone refers to Jeff’s conscientious nature as a form of courage and draws a parallel to the courage that Phil Jr. shows in just living his life every day.
At 31, Phil Jr. is now a computer engineer, entrepreneur, has a black belt in martial arts, has been married and pushes the envelope with new adventures, such as a recent skydiving trip, which he told his parents about after the fact.
“Now he has the opportunity to have the full flavor of life, to experience the full measure of life. I believe he will continue to blossom as a man because someone cared enough to give him that opportunity.”
As his son was given a future, Gattone sees Paragon as the future for so many more in need.
“They have made an exponential impact in the field of healthcare, not just innovative therapies, but in providing tools for non-profits to succeed and have a sustained impact. They are filling in all the gaps that come with a rare disease. Truly orphan diseases or segments within them are very difficult challenges that need to be met over and over.”
More about Phill Gattone, Jeff Aronin, and the Epilepsy Foundation at https://www.epilepsy.com/atom/21736