A Cruel Disease For Which There Is Yet No Cure
By Larry Printz | THE NAPA EVENT
Alfredo Ferrari, aka Dino, Enzo’s only legitimate son, had the bad luck of being born into both the Ferrari dynasty and a body riddled with Duchenne Muscular Dystrophy. It's a cruel disease for anyone, but doubly cruel for a boy whose father, Enzo Ferrari, felt vitality meant red-lining a Colombo V12 at 7,500 rpm. Dino studied mechanical engineering at Bologna and whispered of ideas for lightweight, small-displacement Ferraris when his father was still pounding the table about twelve-cylinder purity. Confined to a bed, Dino's death in 1956 at age 24 from Duchenne Muscular Dystrophy found Enzo facing the one thing he couldn't outrace.
1969 Dino 206 GT by Scaglietti. Photo courtesy
of RM Sothebys
Out of this personal cataclysm came the Dino, a brand name that Enzo insisted carry only his son’s name, not his It was a memorial in metal, a way for Enzo to keep Dino alive not just in memory, but in motion. The Dino 206 GT was nimble, light on its feet and, thanks to Pininfarina, gorgeous. It carried its namesake’s engineering insight – lightness of spirit — into the world long after Dino Ferrari himself was gone.
Fast-forward to 2002. Debra and Paul Miller's son Hawken is diagnosed with Duchenne Muscular Dystrophy at age five. They had never heard of the disease, and the prognosis is devastating. The Millers are told that there were no treatments, nor any cure. Hawken would die by age 18. There's nothing that can be done aside from their going home and loving their son.
Once again, this personal cataclysm leads to something great. The Millers establish CureDuchenne, a global nonprofit headquartered in Newport Beach, California that funds early stage research that provides proof of concept early on, with the aim of getting larger investments from biotech companies and venture capitalists, which can get then see it through the process of clinical trials, and become an FDA-approved drug.
Duchenne Muscular Dystrophy is the most prevalent and severe form of Muscular Dystrophy, affecting 1-in-5,000 male births. It's caused by a mutation of one of 79 exons on the dystrophin gene, which is integral to maintaining muscle health. A deletion or a duplication of any one or multiple of those 79 exons can cause the muscle-wasting disease, meaning it manifests differently in every person. That makes curing it difficult.
So far, CureDuchenne provided the early funding to the first FDA-approved Duchenne drug and supported companies responsible for six of the eight FDA-approved drugs for Duchenne. The charity has Invested more than $26 million in 50 research projects, including investments in 29 companies. This has catalyzed venture capital, biotech, and pharmaceutical companies to invest more than $3.6 billion to advance Duchenne therapies. The results? Eighteen funded research projects have advanced to human clinical trials.
And while some Duchenne Muscular Dystrophy patients die in their teens, Hawken is 28.
The Napa Event seeks to heighten awareness of CureDuchenne and its efforts to combat the disease with a display of Dinos throughout the weekend, with patients getting rides in Dinos during our Vintage Rally on Saturday. It’s only fitting. After all, while Enzo Ferrari may have built monuments to speed, only Dino’s death made him build a monument to love.