Duchenne Muscular Dystrophy Fundraising
Susan and Chris Finazzo, and their sons Chase and Dylan—both of whom have Duchenne muscular dystrophy—at their suburban Miami home, along with Oliver, the family dog. Credit: Larry Luxner.

MIAMI — As president of Burger King Americas, Chris Finazzo oversees roughly 10,000 of the chain’s 18,000 fast-food outlets around the world. 

But this 39-year-old restaurant executive’s biggest mission right now — and that of his wife, Susan — is finding a cure for the disease that afflicts their two sons, Chase and Dylan.

Interviewed recently at their Miami home, the Finazzos described how their lives took a sudden, frightening direction when Chase, now 6, was diagnosed with Duchenne muscular dystrophy.

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“It was September 2019, Chase had just started kindergarten, and we noticed he was a little weaker than the other boys. Actually, he was 4 when we first started noticing it,” said Susan, 38. “I mentioned to his pediatrician that Chase was kind of clumsy. Dylan, who was around 2 at the time, was already going to physical therapy because he was late walking. So I asked the therapist who was seeing Dylan for ankle muscle weakness if she would evaluate Chase too.”

After 6 months working with Chase, that therapist advised the couple to see a neurologist, based on the abnormally large size of their older boy’s calf muscles.

“At the gym, Chase was a celebrity. People would literally stop us on the street and ask us what his workout routine was,” said Chris, who by then already suspected something was wrong with his son. For one thing, Chase had already fallen down the stairs numerous times at school.

“We remember standing in the kitchen, Googling ‘large calf muscles,’ and the only thing that popped up was Duchenne. Nothing else. If there are 12 symptoms of Duchenne, he had 11 of them,” Chris said. “I was convinced it was Duchenne, but Susan was in denial. For months, I bottled it all up because I didn’t want to panic Susan. I was obsessively researching what treatments there were and what we should expect, so that when we did get the diagnosis, I sort of had a plan of action.”

An Encouraging Coincidence Amid the Sorrow

That diagnosis came in early December 2019, after a blood test showed Chase’s creatine kinase (CK) levels at 35,000, compared to a normal reading of around 200. Further testing showed that Susan is a carrier of Duchenne; in this case, her deletion is found on exons 48 and 50 of the dystrophin gene, the largest known human gene.

But right behind the bad news arrived a ray of hope. By coincidence, a friend of the Finazzos who had just visited them in South Florida knew of Paul and Debra Miller, the cofounders of CureDuchenne in Newport Beach, California. That friend put the two couples in contact with each other, and a month later, the Millers came to Miami to meet Chris and Susan.

“We’ve since developed a really good friendship with them. I talk to Debra every couple of weeks,” Chris said. “I have a creative agency I work with through Burger King that’s volunteered to take on CureDuchenne on a pro bono basis. Effectively they will be the creative agency for CureDuchenne to raise awareness and money.”

Added Debra Miller: “We always wish we’d meet families under different circumstances. But Chris and Susan have turned out to be phenomenal friends and parents. We know they’re going to make an impact on Duchenne, and we are so grateful to partner with them as we increase awareness. It’s parents like them who will cure Duchenne.”

The first event they sponsored on behalf of CureDuchenne, held last November in the midst of the pandemic, took place at the American Social restaurant in Miami’s Brickell district. Some 30 people attended the gathering, which raised nearly $130,000 for Duchenne research — a nice start, but a relative drop in the bucket.

“If Duchenne was better funded, we’d find a cure pretty easily. For example, the Ice Bucket Challenge raised more than $100 million for ALS research. If you look at cystic fibrosis, years ago it was a death sentence. Today there are treatments,” Chris said, noting that the average cystic fibrosis patient born today will live for 46 years, up from only 5 years half a century ago.

Helping with the effort are two big names: Fernando Machado, Burger King’s former chief marketing officer and the brains behind its controversial “Moldy Whopper” TV commercial, and Anselmo Ramos, cofounder of the Miami-based ad agency Gut; he’s already begun working with CureDuchenne on a mass fundraising effort.

“It helps to know the right people,” Chris said. “We’re very fortunate to have a good support system around us.”

A Very Strict Diet — and Occasionally, Ice Cream and Cookies

Susan and Chris Finazzo, and their sons Chase and Dylan—both of whom have Duchenne muscular dystrophy—at their suburban Miami home. Credit: Larry Luxner.

In the meantime, said Susan, both boys are active, normal kids. Chase has been on deflazacort (Emflaza) for more than a year and has responded well, with his score on the standard NorthStar Ambulatory Assessment rising from 27 to approximately 33 out of 34. Dylan began steroid treatment in May. 

“The hardest problem we had was getting our insurance to cover deflazacort. They want you to start with prednisone, which has much harsher side effects,” she said. “It’s extremely expensive in the beginning, because we’re paying full cost. I can have physical and speech therapy for Dylan, and then return the same day for Chase. That’s $800 just for that one day before I even hit the deductible. We also have ADA behavior therapy which is not covered at all.”

Fortunately, the weight gain normally associated with Duchenne has not been a problem for Chase and Dylan. 

“We keep the boys on a pretty strict diet of low sugar, low sodium, and low fat. They’re so young they’re not really missing it,” she said, adding that “on rare occasions, we let them have ice cream and cookies.” 

Chris said both boys currently take vitamin D supplements as well as CoQ10, a nutraceutical believed to improve heart function. In addition, Dylan takes a daily probiotic to help him with Duchenne-related gastrointestinal issues. Both boys receive physical and speech therapy, and Chase gets occupational therapy as well.

“Anything we can do to slow the progression of the disease would be pretty amazing,” Chris said. “Today, we have something many other parents didn’t have, which is hope,” he said, noting the recent success of gene therapy trials with beagles, which were still expressing dystrophin at the time of their death, 12 years after treatment.

“The big question is how long this will last, but there’s some evidence it will last at least 10 years,” he added. “The hope today is that in 10 years, we’ll be able to dose [again]. We’re betting that the science will be there — or that the onset of the disease will be closer to Becker. Either of those would be good  outcomes for us.”

Gene Therapy Trial Offers Some Hope

With that in mind, the Finazzos are hoping to have Chase, and possibly Dylan, enrolled in CIFFREO, Pfizer’s Phase 3 trial for PF-06939926, an investigational gene therapy that treats Duchenne by using a modified AAV9 capsid to deliver a shortened version of the gene that codes for the missing dystrophin protein. 

The placebo-controlled, randomized, double-blind study began in December 2020 and involves 99 boys aged 4 to 7 years who can walk independently. It is expected to encompass 55 sites in 15 countries including the United States, Israel, Italy, and Spain. 

“We believe our gene therapy candidate, if successful in Phase 3 and approved, has the potential to significantly improve the trajectory of DMD disease progression, and we are working with worldwide regulatory authorities to initiate this program as quickly as possible in other countries,” Brenda Cooperstone, MD, chief development officer at Pfizer Global Product Development, said in a press release.

While the COVID-19 pandemic has certainly made life harder for everyone, Chris says that to some extent it’s been a blessing in disguise for his sons.

“As we’re getting closer to the trial, we want to make sure the boys don’t pick up the antibodies,” he said, noting that 30% to 40% of preschool-age kids already have antibodies, rendering them ineligible for gene therapy. “So we figured that as long as we’re in the coronavirus world, it’s acceptable to live in a bubble.”

Meanwhile, both boys must sleep with leg braces, and both are stretched every night.

“Growth is going to be a big problem. They’re short. Chase is already falling behind. The steroids are beginning to stunt his growth, and Dylan is already tiny. They’re always going to be the smallest and the weakest,” Chris said. “Chase has an idea that his body is a little different than [those of] his friends; that’s why he gets tired quickly, and why he sometimes falls down.” 

Susan acknowledges that the road ahead is difficult.

“In the beginning, it’s very upsetting to hear, but now we know that will be our life’s work,” she said. “ Although Duchenne is not what we had planned for, it doesn’t mean our lives are going to be any less beautiful or amazing.”