NYCHA Employee Raises Awareness about Arthrogryposis Multiplex Congenita

In 2021, the U.S. Congress officially recognized June 30 as Arthrogryposis Multiplex Congenita (AMC) Awareness Day. AMC is a rare condition present in 1 in 3,000 newborns a year that causes many joints to be stiff and crooked at birth. The condition is not curable and limits an individual’s ability to move certain parts of their body.

Valerie Pepe, a long-time NYCHA employee has made it her life’s mission to raise awareness and assist people with the condition.

Ms. Pepe saw an ad in the New York Times for a Training Coordinator position 28 years ago, and she has been a NYCHA employee ever since. Currently, she is a Business Analyst in the Environmental Health and Safety Department. When Ms. Pepe is not working for NYCHA, she is doing charity work, volunteering, writing a book, and raising awareness and funds for people with AMC. Most recently, she successfully advocated for Congress to make June 30 “AMC Awareness Day” as part of the Congressional Record.

“June is a very important month for me,” Ms. Pepe noted. “My birthday is in June. When I was born, they told my mother I won’t walk. Yet here I am. Congressional Record and acknowledgment is a milestone for me. My goal was to bring medical research attention to my condition.”

Although Ms. Pepe has lived with AMC her whole life, she was in her 40s when she decided to do something to raise awareness about the condition.

“One day I tripped in my parents’ house and bruised my rib,” she explained. “We had to go to the hospital. Before, I was getting the best treatment because I was a kid. And here I was, an adult in the emergency room, and no one knew what I had. Adult care for AMC is very limited, so doctors don’t study it, don’t know about it, and don’t know how to treat it. At that moment, I decided that I have to do something to change that.”

A decade ago, Ms. Pepe and her musician friends organized an event to inform people about the cause and raise money for the non-profits that help people with AMC. Two hundred people showed up at the event the first year, and ever since the number of people eager to help has grown.  

“In 2012 I had this huge event, and it’s been going on ever since,” she said. “Everyone volunteers, sound equipment is donated, and a NYCHA employee who has a band performs every year. Many former NYCHA employees volunteer their time at the annual event, as well. When I started this, few people knew about my condition. Now, more and more people know about it. My mission is to make sure that society knows and understands AMC, so the next generation doesn’t have to go through what I had to go through.”

Ms. Pepe also brings her volunteering and communication skills to the table at NYCHA: As a NYCHA Change Ambassador and member of the Employee Engagement Committee (EEC), she shares updates about the Authority’s plans for progress and helps ensure that everyone is involved with NYCHA’s transformation.

“When the EEC started, I felt that I could offer my knowledge to those who come after me in NYCHA because I have been here for so long,” she said. “I wanted to share my opinion on things that matter to NYCHA and me personally, and also listen to everybody else’s ideas. We are a great group of people who are really dedicated to this. We do this as a team.”