By Kimberly Phelan

Oh, what a night! Wayne and I were truly honored to present on behalf of NORD, the 2023 Industry Innovation Award to Honorees, CSL Behring and uniQure for HEMGENIX, the first approved Gene Therapy for people with hemophilia B at the NORD (National Organization for Rare Disorders) Gala. Accepting on their behalf were Robert Lojewski, Senior Vice President & General Manager, North America at CSL Behring and Matt Kapusta, Chief Executive Officer at uniQure.

This was also NORD’s 40th Anniversary Celebration! We were delighted to see Abbey Meyers (the “Mother of Movement”) receive a Lifetime Achievement Award. A movement, that in 1983, became the first national nonprofit organization (NORD) for all rare disorders!

Shout out to Bernie Williams (Yankee fans) for his Rare Impact Award, helping families with idiopathic pulmonary fibrosis (IPF), which Bernie’s father was diagnosed with and passed away, and other forms of interstitial lung disease (ILD).

Opening remarks were made by Peter Saltonstall, President and CEO of NORD, followed by a welcome by emcee for the evening, Peter Alexander, an Emmy award-winning journalist, co-anchor of Saturday Today, and Chief White House Correspondent for NBC news and many other platforms. Special musical performances by CeeCee and Christian Guardino.

There were so many wonderful honorees and heartfelt stories this evening. We also had the distinguished pleasure of having Mark Skinner at our table. It was so wonderful to see him and catch up! We applaud all for their good work and perseverance! This was truly a wonderfully memorable evening.