Try to imagine suffering from an agonizingly painful disease so rare that it goes undiagnosed for a decade. Desiree Lyon doesn’t have to imagine that scenario. Ms. Lyon suffers from a rare disease (also known as an orphan disease) called acute intermittent porphyria.
Porphyria can adversely affect urinary health, attack the central nervous system and cause severe abdominal pain. Desiree Lyon endured 100 flare-ups of the latter.
After being diagnosed Ms. Lyon found relief from injections of the drug Panhematin. Panhematin was taken off the market after the company that produced it, Abbott Laboratories, decided to stop production of Panhematin rather than revamp the production facility.
Fortunately, rare disease suffers have a friend and ally in Jeff Aronin. In 2000 Mr. Aronin founded Ovation Pharmaceuticals. Ovation kept Panhematin on the market by educating the medical community about porphyria. This education led to the diagnosis of enough cases of porphyria to make producing a treatment profitable.
The DePaul University graduate was inspired to put his MBA to use producing pharmaceuticals after meeting a child who suffered seizures. Since the seizures could be controlled with meds the boy was spared undergoing a risky surgery.
A humanitarian first and foremost Mr. Aronin decided his company would focus on developing treatments for rare diseases. Within nine years Ovation was so successful that it was purchased for $900 million by the Danish company Lundbeck. Lundbeck retained Jeff Aronin as CEO.
Today, Jeff Aronin continues his work on behalf of those with rare diseases as Chairman and CEO of Paragon Biosciences. Paragon finds financing and talent for start-up pharmaceutical companies.
Harmony Biosciences is one of the companies Paragon helped to get established. A research company Harmony focuses on diseases that affect the central nervous system. These diseases include narcolepsy an inability of the body to regulate sleep cycles causing unusual sleepiness during waking hours. Harmony is also seeking a treatment for a symptom of narcolepsy a sudden loss of strength known as cataplexy.
The Aronin Family Foundation advocates for patients with rare diseases. The foundation has also made considerable donations to medical facilities around the world.