One father's heartbreak inspired a $250M quest for a cure

Every new drug ever approved involved years of work by dedicated teams of investigators. In the case of the new cystic fibrosis drug Kalydeco from Vertex ($VRTX), the story also includes Boston businessman Joe O'Donnell, who helped raise much of the money the Cystic Fibrosis Foundation used to back the development of the treatment.

The Boston Globe today tells the touching story of O'Donnell's passionate commitment to getting the treatment pushed to an FDA approval. The groundbreaking treatment heralds the approach of a new generation of therapies intended to help treat the full range of CF patients. And that's possible because O'Donnell devoted much of the past 30 years to raising more than $250 million for the foundation following the death of his young son Joey, a victim of CF.

"We would not be where we are, had he not been there,'' foundation CEO Robert Beall tells the Globe. "He's authentic. He's a man of his word. He's not going to ask anybody for anything that he doesn't believe in.''

It all hit home when one of the parents of a young CF victim told O'Donnell how much the new treatment had helped.

"That was the moment for me,'' O'Donnell said. "I talked to Gerry (Cheevers) and, my God, the dam broke. You get emotional. It's a long slog, and I think of Joey. It's one of the reasons he was put on this Earth.''

- here's the Globe article

Suggested Articles

As Relay looks to enter the clinic in 2020, the company is adding a trio of biopharma vets to its leadership team.

A phase 3 trial of Myovant Sciences’ relugolix in prostate cancer has met its primary endpoint, teeing the company up to file for FDA approval.

The Medicines Company, fresh from its turn at the AHA this weekend, has seen its shares jump on growing rumors that Novartis wants to acquire it.