Staff

Executive Director

Susan L-J Dickinson, M.S., CGC joined The Association for Frontotemporal Degeneration as Executive Director 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.

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.

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.

Business Manager

Michelle Leahy joined AFTD as Office Manager in August 2009. She has 20 plus years of management and residential design experience in the private sector. Her position changed to Business Manager in the summer of 2012. Michelle is responsible for the management of business operations, internal control systems, annual audit efficiency, HR policy and compliance and donation processes. She also oversees logistical aspects of AFTD-hosted conferences.

Communications Manager

Darlene Blevins joined AFTD as Communications Manager in November 2015. She brings more than 15 years of marketing, and communications content and strategy development experience, working for both for-profit and nonprofit organizations. She is currently working toward an MS in Nonprofit Management. She will manage all of AFTD’s Communications efforts, and provide social media strategy expertise to broaden AFTD’s impact.

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.

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.

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.

Support Services Manager

Bridget Moran, 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.

Volunteer Manager

Kerri Barthel, 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.

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.

Development & Business Assistant

Jamie Barnaba joined AFTD in April 2015 as Development & Business Assistant. She brings corporate and academic experience that includes database work, writing, communications, and event planning. She holds a B.A. in Communications from West Chester University of Pennsylvania.

Programs and Services Assistant

Harold “Hal” Perkins, III joined AFTD as Programs and Services Assistant in February of 2016. His background includes customer service, sales and print sales roles. He has a Bachelor’s degree in Health Science from La Salle University and is currently working toward an M.P.H., graduating in August 2016. 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.

Staff Writer

Matthew Ozga joined AFTD in October 2016 as its staff writer. 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 writes in varied contexts to support AFTD’s sustainability and public presence. He holds a Bachelor’s in journalism from New York University.