Congresswoman with Alopecia Areata Meets Twice with NAAF Community

Oct 07, 2021

Representative Ayanna Pressley was elected to the House of Representatives in 2018, representing Massachusetts’ 7th Congressional District which is part of Boston. In January 2020 the Congresswoman publicly announced she had alopecia areata. We had planned to meet with Representative Pressley during our 2020 Conference in DC, but when COVID dictated that the gathering be virtual the Congresswoman graciously made us a video which we used to open the Conference.

That September, she championed the cause of alopecia areata awareness on the floor of the House of Representatives. Representative Pressley was a co-sponsor of our previous cranial prosthetic legislation and will now be co-lead, along with Congressman McGovern, of our upcoming cranial prosthetic bill (see above). In anticipation of the new legislation being introduced, the Congressman met twice with the NAAF community, both in person and online.

The first meeting was on Saturday, September 18. Boston Support Group Leader and Legislative Liaison Chrissa Kaselis, along with fellow Legislative Liaison Luke Pelletier, coordinated a group discussion after being contacted by the Congresswoman’s office. Here, Chrissa describes the meeting:

“I and some other members from the Boston support group had lunch with Representative Pressley. It was a true honor for me and she was so incredible to speak with. Yes, it was honestly a great afternoon. It was so empowering both for those of us in the group and for the Congresswoman. It was a very real meeting and she just enjoyed meeting people who understood where she was coming from. We cried, we laughed, and we shared our stories and struggles with alopecia and she shared hers. She had many questions for all of us, and as she said we are her people now.”

The following Thursday, September 23, the Congresswoman met online with NAAF’s Advocacy Committee and Legislative Mentors, Board Chair Ann Hollins, Acting CEO Jeanne Rappoport, Communications Director Gary Sherwood, and members of Dr. Kristen Lo Sicco’s team at NYU Langone Medical Center. The Congresswoman was thanked for using her office to significantly raise awareness of alopecia areata while reminding our community members they have a friend on Capitol Hill. Representative Pressley confided when she was first diagnosed she was so initially focused on her hair loss, “I underestimated what I would gain. I’ve gained an incredible community.” She then shared various policy goals designed to increase awareness, access to cranial prosthetics, and greater research funding. During a Q&A session where Representative Pressley seemed most moved by the younger advocates sharing their stories, the Congresswoman advised them when dealing with bullies, “Tell them you have a big sister in Congress.” Before her time with us came to a close (she is one busy lady!) the Congresswoman assured us this meeting was “not a one-off;” we have a productive future ahead with her office. When asked whether she planned to attend the next NAAF Conference in Washington, DC, the Congresswoman exclaimed, “I better!” To learn more about our Legislative Liaison and Legislative Mentor programs, please contact Gary Sherwood gary@naaf.org.

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