A Grateful Farewell to Two Significant Leaders

FD/MAS Alliance has been immensely lucky to work with some truly inspiring leaders, and this fall, two of our most dedicated directors have stepped down from the board. We are indebted to and deeply grateful for the work that Sue Barnicle, as Treasurer, and Jack Kelly, as Secretary, have done for the FD/MAS Alliance.

“It was a privilege having both Jack and Sue on our Board and serving with them on our Executive Committee,” Said Cindi Brandt Levin, FD/MAS Alliance’s Vice President. “Jack added tremendous value from his experience leading another rare disease organization as well as his business expertise — especially during the difficult financial times we faced from the pandemic. And Sue always went the extra mile to serve our organization and spearheaded our government funding during COVID-19.  We all will miss them both!”

As part of our Executive Committee, both Sue and Jack worked closely with staff. “Sue was a great resource with tons of accounting experience,” said Suzie Doody, FD/MAS Alliances’s bookkeeper, “She was always willing to talk through a problem to the best solution. She is a very kind person, professionally and personally.” Tovah Burstein, who served as Interim-Executive Director under Sue and Jack’s leadership, recalls them both as voices of reason and reassurance during that transition. “Without Sue’s kind and thoughtful consideration, I would have felt very overwhelmed,” shares Tovah, “and Jack helped the organization gain perspective and make difficult decisions that allowed us to grow and improve ourselves.”

“I feel that Sue put a lot of time into her position as treasurer and took on tasks that would have otherwise been done by paid employees when the organization didn’t have the resources to do so.” Said Adrienne McBride, FD/MAS Alliance’s Executive Director, “I know the work of the foundation was personally important to her.” In contrast, Jack served the FD/MAS Alliance and, at the same time, he has served as President of the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA). “Jack brought a much-valued perspective and openness to the Board. I,” said Adrienne, “I look forward to staying connected to Jack as a colleague and friend, and I hope to emulate Sue’s collaborative nature, hard work, and wisdom in my work.”

“Jack and Sue have been incredible assets to the board and the FD/MAS community as a whole,” said Lauren Ruotolo, FD/MAS Alliance President. “Their leadership, unique and valuable insight, commitment, and enthusiasm over the past few years have been invaluable in crafting FD/MAS mission, business, and fundraising efforts.” We hope to build upon their work and vision in the years to come.