MDF is delighted to introduce the newest addition to our team, Shannon Healey, who has joined us as our Senior Manager of Community Engagement. With Shannon’s background in rare disease communications and program development, she is well equipped to support the myotonic dystrophy community.
Shannon brings 20 years of program, development, and communications experience in both the for-profit and non-profit sectors. She first learned about myotonic dystrophy (DM) at the Jett Foundation, a direct services organization serving the general muscular dystrophy community, where Shannon worked for more than 5 years. At the Jett Foundation, she led the Camp Promise program, a free summer camp for youth and adults with muscular dystrophy, and spearheaded development efforts for the organization as the Program Development Director and later as the Organizational Development Director. In this role, she discovered her passion for the rare disease community. She went on to work at the Yaya Foundation, which accelerates research and provides support to those impacted by 4H Leukodystrophy, an ultra-rare progressive and neurodegenerative disease, as the Director of Institutional Advancement.
Shannon’s background has provided her opportunities to work with communities with diverse experiences navigating the medical system. She enjoys learning from people with lived experiences and is passionate about streamlining processes, empowering people with resources, and facilitating opportunities for community and connection. When Shannon came across this position at MDF, she was excited to build on the great structure in place at MDF and to join in the acceleration of research and support for the myotonic dystrophy community.
In her role as Senior Manager of Community Engagement, Shannon will be managing the MDF warmline, where she will connect community members to information and provide guidance on DM-related questions. Shannon will also be creating a robust training program for MDF support group facilitators and expanding volunteer opportunities at MDF.
Shannon resides nearby one of the 2024 Regional MDF Conference sites, in Boston, MA! Keeping her company in Boston are her husband, two kids, and a small zoo of pets comprised of a tortoise, three turtles, two geckos, and two dogs!
Please join us in extending a warm welcome to Shannon Healey as Senior Manager of Community Engagement!