February 29 only occurs every four years. In recognition of this rare day, a trio of Einstein centers — the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center (IDDRC), the University Center for Excellence in Developmental Disabilities, and the Children’s Evaluation and Rehabilitation Center (CERC) of — co-sponsored a special concert, "Rare People and Rare Talents on a Rare Day."
In offering opening remarks, Dr. Steven Walkley, director of the IDDRC noted, "Rare Disease Day started four years ago on this date. Awareness has now reached a tipping point where people are becoming more familiar with this concept of ‘rare disease’– which by definition is any disease affecting fewer than 200,000 people."
He continued, "There are 6,000 to 7,000 rare diseases in this country, affecting about 25 million Americans in total. When we think about it in these terms, rare disease is not really very rare at all. And very few of these diseases – only about 250 – have approved therapies."
Dr. Robert Marion, director of CERC, also welcomed the crowd, adding, "Today’s celebration is really about people. We’re going to hear four very special people, whom I’ve had the pleasure of knowing and caring for in my practice at Montefiore and at CERC."
He then introduced the performers who also are current patients of his. They included:
The festivities, which included a performance by a troupe of young girls performing Irish step dancing, were a great success. And the event achieved its dual goal of underscoring the difference that research can make in the lives of patients suffering from these conditions and of inspiring people with or without disabilities "to do bigger things by keeping faith, courage, hope, and by never giving up."
Dr. Safyer Announces Key Leadership Appointments at Montefiore
Thursday, September 22, 2016
Exploring Multiple Career Opportunities
Tuesday, August 30, 2016
Einstein-Montefiore Clinical Research Training Program Begins a New Chapter
Monday, August 22, 2016
Puzzling—and Fun—Approach to Relieving Stress
Thursday, August 11, 2016
George Washington's Dedication to Medicine
Wednesday, August 03, 2016
Gearing Up for Career Success at Einstein Ph.D. Alumni Symposium
Monday, August 01, 2016
IRACDA Fellows Show Off Their Research Skills, Education-Style
Friday, July 29, 2016
Passing of Dr. Samuel Levine Marks the End of an Era
Thursday, July 28, 2016
Einstein's Newest Ph.D. Candidates Rejoice at Qualification Jubilation
Monday, July 25, 2016
Symposium Offers Young Einstein-Montefiore Investigators Opportunity to Shine
Friday, July 22, 2016