Our Directors and Officers

Ron Bartek
Friedreich’s Ataxia Research Alliance (FARA)
Chair

Karin Hoelzer
National Organization for Rare Disorders (NORD)
Secretary

Paul Melmeyer
Muscular Dystrophy Association (MDA)
Treasurer

Kristin Schneeman
FasterCures, a Center of Milken Institute
Director

Annie Kennedy
EveryLife Foundation for Rare Diseases
Director

Jonathan McPherson
PTC Therapeutics
Director

Diana Pankevich
Pfizer
Director

Jasmin Phua
Datavant
Director

Kristin Stephenson
St. Jude Children’s Research Hospital
Director

The mission and operations of the organization are supported by Bluebird Strategies and Kevin Brennan, NCATS Alliance, Executive Director.

J. Kevin Brennan
Principal, Bluebird Strategies