FD/MAS Alliance Leadership enhanced!

FD/MAS Alliance is thrilled to welcome four new leaders as well as a familiar face to our Board. The people who lend their time and talent to the FD/MAS Alliance become the main drivers of our activities and initiatives. They plan webinars, patient conferences, and support programs. They build relationships with researchers, oversee our patient registry, and lead advocacy efforts for continued federal research funding. They set the course for the FD/MAS Alliance and work their hardest to make a difference for the FD/MAS community. We are grateful for the new energy, ideas, and resources that they bring to our work.

We welcome Carrie Nawrocki of New Jersey, Malissa Kenney of Massachusetts, Jessica Barrett of Iowa, and Gary Pollastro of Washington. We’re also thrilled that founding member, James Rae has graciously agreed to return and serve again as our Treasurer. 

Carrie and Gary are both the parents and caregivers of young ones with FD/MAS. Jessica serves in support of her niece, who is an FD/MAS patient. Jessica is an epidemiologist and the Executive Director and Health Officer of two regional health commissions, Carrie brings great experience in public health along with her passion for making a difference. Gary’s background in business and marketing will keep the organization fresh and focused on progress. 

Jessica also brings experience in public health as a community health organizer. She has worked extensively with non-profits in her community, including the Humane Society and Planned Parenthood. 

Malissa continues a tradition of philanthropy for her family as the niece of outgoing Treasurer Sue Barnicle. Sue joined the board just as Spitzi, Sue’s daughter-in-law, and the mother of a young FD/MAS patient, stepped down. Malissa is the first cousin once removed of her FD/MAS diagnosed family member and brings years of experience in nonprofit leadership with her to the board. The determination and solidarity this family has shown in the face of FD/MAS is truly the spirit needed to bring meaningful change to the state of FD/MAS care.

James is a patient himself and, in addition to being a founding member of the FD/MAS Alliance, also served as the organization’s treasurer. The professional and transparent practices that govern FD/MAS Alliance’s finances are of the utmost importance, so Rae’s experience as a CPA is invaluable. Rae has agreed to fill this role for the next calendar year with the hopes of finding another qualified volunteer to assume the role. 

FD/MAS alliance has refocused, rebranded, and relaunched a website, which has given the organization a renewed sense of purpose and energy. 

“When COVID hit, we were determined to emerge more vital than before, and we are building momentum,” said Adrienne McBride, Executive Director of FD/MAS Alliance, “We are excited about our new board members. They are ready and willing to do what it takes to advance our mission, and their enthusiasm is contagious – in a good way.”