Chief Executive Officer

Susan L-J Dickinson, M.S., CGC joined The Association for Frontotemporal Degeneration as Chief Executive Officer in February 2008. Under her leadership, AFTD has expanded dramatically in scale and impact, from a $400,000 organization with a part-time staff of three to a $2.8 million organization with 15 full-time staff. During her tenure, AFTD has expanded programs to meet and advocate for the needs of FTD families and invested in specific strategies to advance FTD research and drug development, including a multi-year, $5 million initiative to identify biomarkers for FTD. Susan is a certified genetic counselor with more than 25 years’ experience facilitating communications among lay, scientific and medical communities for the benefit of patients, their families and professionals. She holds an MS in genetic counseling from Arcadia University and a BA in biology and psychology from Swarthmore College.

Program Director

Sharon S. Denny, M.A., joined AFTD as Program Director in September 2008. She has more than 25 years experience with nonprofit organizations that serve people with disabilities and their families. Her concentration has been on the development and delivery of innovative, responsive services to some of the most vulnerable people in our community, including those with serious psychiatric illness and traumatic brain injury. Sharon brings this commitment to AFTD where she directs our caregiver support and educational initiatives.

Development & Communications Director

Ben C. Freeman joined AFTD as Development & Communications Director in February 2015. He brings more than ten years of experience in nonprofit development and communications, and past background in IT and technology systems. For a decade, he served as Development Director for the Paraprofessional Healthcare Institute, helping to scale its work to improve care for elders and people living with disabilities. Ben works with AFTD’s staff, Board, and community to raise awareness, expand the organization’s visibility, and strengthen its impact and sustainability.

Chief Financial Officer

Christine Stevens, M.B.A., joined AFTD in July 2017 as Chief Financial Officer. Christine spent the early portion of her career working for entrepreneurial startups, building teams and systems to enable growth at fast-paced companies. In 2003, she left the for-profit world to begin her own small business in Wayne, PA. In 2008 she joined the nonprofit world as Director of Finance for Women Against Abuse. In recognition of her work there she was named the 2013 Philadelphia Business Journal Non-Profit CFO of the year. She holds an M.B.A. from Northeastern University, and a B.A. in Economics from St. Lawrence University. She earned her CPA license working for PricewaterhouseCoopers.

Scientific Director

Nadine Tatton, Ph.D., joined AFTD as Scientific Director in June 2013. She has more than 20 years’ experience as a neuroscientist in basic science and translational research, combined with technology transfer and business development expertise. She has a personal connection to ALS, having been a family caregiver and is deeply committed to the translation of scientific discoveries into treatment opportunities that will benefit patients and caregivers alike in FTD and other neurodegenerative disorders.

Volunteer Manager

Kerri Keane, M.S.W., joined AFTD as Volunteer Manager in September of 2012. She has over 13 years of experience advocating for and supporting the needs of individuals, with life-threatening and debilitating diseases, and their families. Her extensive background includes developing and implementing effective programs and a passion for volunteering.  Her volunteer work includes spearheading and managing a grassroots advocacy coalition in Pennsylvania for four years and completing two international missions through Doctors Without Borders. Kerri’s skills and experiences will be used to strengthen and develop the AFTD volunteer network.

Development Manager

Pamela E. McGonigle, M.A., joined AFTD as Development Manager in April 2011. She has more than 16 years of significant experience and achievements in nonprofit organizations with a proven track record in developing and implementing fundraising strategies, plans and programs that yield enhanced visibility and increased revenue streams. Currently, Pam serves as the chair of the board of directors for NOAH, another rare disease organization. Pam is a Paralympic gold medalist, and for the past 20 years she has been an active spokesperson for persons with disabilities.

Support Services Manager

Bridget Moran-McCabe, M.P.H., joined AFTD in May 2015 as Support Services Manager. She now works collaboratively with AFTD staff and volunteers to foster resilience in and engage our growing community. A key part of Bridget’s role is to create and manage a national network of support groups across the U.S. She holds a Master’s in Public Health from Drexel University. Bridget joined AFTD from the University of Pennsylvania, where she coordinated clinical and research projects in the fields of mental and community health.

Research Manager

Debra Niehoff, Ph.D. joined the AFTD staff in October 2015 as Research Manager. A neuroscientist by training, she holds a Ph.D. from the Johns Hopkins University School of Medicine. The author of two popular science books, her experience includes teaching at the college level and scientific and medical writing, as well as service on the board of a drug and alcohol treatment facility in Bucks County, PA. Debra is responsible for the administration of AFTD grant funding programs as well as planning for the FTD Treatment Study Group.

Communications Manager

Matthew Ozga joined AFTD in October 2016. He brings more than a decade of experience writing for diverse audiences, including seven years of experience in nonprofit communications as the staff writer/editor for the Paraprofessional Healthcare Institute. In collaboration with AFTD’s development and communications team, Matthew works in varied contexts to support AFTD’s sustainability and public presence. He holds a Bachelor’s in journalism from New York University.

Program Manager

Matthew Sharp, M.S.S., joined the staff in December 2009 as Program Coordinator. Having earned his Master of Social Service degree from Bryn Mawr College’s Graduate School of Social Work and Social Research, he made a career transition to social services from the field of natural sciences. Matt also has a personal connection to FTD, as his father-in-law was recently diagnosed with the disease. Matt is integral to AFTD’s patient and caregiver support and education efforts, and is responsible for the development of AFTD’s Grassroots Network.

Office Manager

Jeff Thompson joined AFTD in January 2018 as Office Manager. Jeff brings close to thirty years of experience in staff accounting, information technology support, and customer relationship management skills from organizations of both global and local scale. He has had experience supporting back office functions in the nonprofit world — most recently in higher education environment, where he worked closely with directors to streamline processes and implement new systems.

Development Coordinator

Trudy Bowman joined AFTD as Development Coordinator in February 2018. With a B.S. in Health Policy and Administration from Pennsylvania State University and more than two years of experience volunteering at a foundation, Trudy brings a focus on relationship management and strategic planning to the Coordinator position. Trudy will play a key role in fundraising appeals, donor engagement, corporate and foundation fundraising, donation processing, and donor acknowledgment and recognition.

Online Community Coordinator

Lauren Gauthier joined AFTD as Online Community Coordinator in August 2017. Lauren’s career spans 16 years, mostly spent in the nonprofit sector, where her primary focus has been on marketing and social media management. In her previous roles she developed social media strategy, created and implemented innovative and successful marketing campaigns and grew the digital audience, influence, reach and impact of multiple organizations. As Online Community Coordinator, Lauren works to deepen AFTD’s engagement with its community through social media, e-newsletters and other forms of digital communications.

Grassroots Events Coordinator

Bridget Graham joined AFTD in October 2015 as Grassroots Events Coordinator. With a B.S. in Speech Communication from Millersville University of Pennsylvania, Bridget brings experience in marketing and business administration to her role. With specific expertise in leveraging social media platforms, Bridget assists the AFTD-Team in their efforts to host and promote the volunteer-hosted events that are a crucial part of AFTD’s fundraising and awareness building efforts.

Programs and Services Administrative Assistant

Harold “Hal” Perkins III, M.P.H. joined AFTD in February 2016. His background includes customer service, sales and print sales roles. In his role, Hal provides administrative support to AFTD’s Program Director, and managers of the organization’s volunteer, support services, education and advocacy programs. Reporting to AFTD’s Volunteer Manager, he provides administrative support to help the organization sustain and expand its program impact.

Development Assistant

Emma Tomasetti joined AFTD as Development Assistant in February 2018. Emma has a B.A. in Business Administration from Arcadia University and brings experience working in the nonprofit sector, specifically in volunteer efforts, event planning, and fundraising. In her previous roles, she assisted with fundraising and logistical projects, handled donations, and assisted volunteers, allowing her to become familiar with nonprofit operations. As Development Assistant, Emma plays a key role in donor engagement, donation processing, and donor acknowledgment and recognition.

Executive Assistant/Event Coordinator

Elizabeth R. Young joined AFTD as Executive Assistant/Event Coordinator in February 2018. She spent the last 16 years as administrative assistant at several banks, supporting the managing director and other team members in their efforts to assist bank clients at not-for-profit healthcare systems and hospitals throughout the U.S. Prior to that, she was the administrative assistant/meeting planner for a not-for-profit continuing education firm. She holds a B.S. in business management from Penn State University.