FIRST staff members and volunteers weathered the damp, rainy morning on Wednesday, May 18 and trekked into New York City to the Today Show studios on Rockefeller Plaza. Staff Jean Pickford
, Moe Wenik
, and Chris Wassel
lead the trip into the Big Apple. Members Denise Benedetto and her sons, Eric and Marc
, who is affected with lamellar ichthyosis, arrived as early as 4:30 am to stake out a prime spot in front of the studio windows. With Denise, was long-time friend Virginia Scully, and her daughters,Theresa and Laura
. Member, Allison Lyons
also participated with her daughter Madelyn
, who is affected with EHK. Allison's sister Beth Connelly
, and mother Marian Egan
also joined in on the fun.
FIRST's contingent donned their bright orange t-shirts from our 2010 National Family Conference in Orlando
, and brought large signs and the FIRST banner. Our group was so visible, they caught the attention of Today Show co-anchor, Ann Curry
. Ann was so taken with member, Marc Benedetto, that she made sure our message made it on air live. During the 8:00 hour, Ann featured Marc in her live broadcast outside the studio. And just like that, ichthyosis had national attention!
Ann was so interested in our group, she spent time between segments chatting with Marc and learning more about ichthyosis. This was a fantastic outing and a remarkable success focusing the spotlight on ichthyosis!
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