May. 31, 2018
Posted by Lisa Sencen
On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD’s 35th Anniversary and to recognize the amazing accomplishments of the 2018 honorees during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards.
Hundreds were in attendance at the stately Mellon that evening and for the first time, NORD broadcasted the event via Facebook Live, welcoming over 3,500 individuals to the event from their homes.
“It was incredible to have so many people join us in D.C. and online to focus on rare diseases and to note NORD’s 35th anniversary,” said NORD President and CEO Peter L. Saltonstall. “The evening showcased the remarkable stories of those creating a brighter future for every person affected by a rare disease. Their stories and achievements are truly inspirational.”
Highlights included award presentations to Lifetime Achievement Award Honoree, Robert M. Campbell, Jr., M.D.; Public Health Leadership Honoree, Richard Pazdur, M.D.; Abbey S. Meyers Leadership Award Honoree Founder of GBS|CIDP Foundation International, Estelle Benson; Rare Impact Award Honorees Patrick Dunegan, Elisabeth Dykens, Ph.D., Maria Kefalas, Ph.D., The Honorable Frank Pallone, Jr. (R-NJ), Ellen V. Sigal, Ph.D. and The Honorable Marcy Toepel (R-PA);. In addition, Industry Innovation Awards were given to six companies for their work bringing important new treatments to patients. Those companies included BioMarin Pharmaceutical, Inc., Cook Medical LLC, Foundation Medicine, Inc., Novartis, Spark Therapeutics and Ultragenyx Pharmaceutical, Inc.
To help commemorate the 35th Anniversary that evening, NORD welcomed long-time friend and Emmy Award-nominated actress Patricia Richardson as the evening’s emcee. Michael Smedley, patient advocate and son of Kristen Smedley, founder of Curing Retinal Blindness (a NORD Member Organization) performed on the piano for attendees. His original song, “Changing What It Means to be Blind,” was performed for everyone in the rare disease community and inspired the audience to continue blazing the path forward for the community, “step by step one day at a time” as his soulful lyrics mention. The David Bach Consort provided a musical accompaniment to the evening, which included a lovely seated dinner.
Looking back on a beautiful evening, the team at NORD is thankful to all those who attended, to our sponsors for their generous support, to our media partners for helping to spread the word, and to the viewers online. Together, we will continue to make progress for the rare disease community. Photos from the event can be found here and an archived copy of the Facebook Live video recording can be found here.