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Susan L-J Dickinson, M.S. | Chief Executive Officer
Susan Dickinson, M.S., AFTD Chief Executive Officer (CEO), joined AFTD in February 2008. A certified genetic counselor, she brings more than two decades of experience facilitating communications among lay, scientific and medical communities. 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 $5 million organization with 20 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 two multi-year, multi-million dollar research initiatives targeting FTD diagnosis and treatment. Ms. Dickinson also serves on the Advisory Council for the National Institute for Neurological Disorders and Stroke. She holds an M.S. in genetic counseling from Arcadia University and B.A. in biology and psychology from Swarthmore College.
Rosa Canet-Avilés, Ph.D. | Senior Director of Scientific Initiatives
Rosa joined AFTD as Senior Director of Scientific Initiatives in January 2020. She brings nearly two decades of experience developing and leading multi-stakeholder initiatives across biopharma, government and nonprofit organizations. In her previous role as the Director of Neuroscience Research Partnerships at the Foundation for the National Institutes of Health (FNIH), Rosa held responsibility for developing and managing the Neuroscience Research Partnership portfolio, which includes: the Accelerating Medicines Partnership (AMP) for Alzheimer’s Disease, AMP Parkinson’s Disease, AMP Schizophrenia, the Alzheimer’s Disease Neuroimaging Initiative 3, and the Biomarkers Consortium Neuroscience Steering Committee. Rosa managed teams in coordination with the NIH, FDA, nonprofits and industry leaders. As AFTD’s first Senior Director of Scientific Initiatives, Rosa will inform organizational strategy and oversee research programs, while personally leading corporate research partnerships and implementation of AFTD’s agenda in the clinical science space.
Sharon S. Denny, M.A. | Senior Director of Programs
Sharon joined AFTD as Program Director in September 2008. She was promoted to Senior Director of Programs in January 2019. She has more than 30 years of experience working with nonprofits that serve people with disabilities and their families. At AFTD, she has led strategic development of support and education efforts for people with FTD, their care partners and families, and healthcare professionals. She advocates for the inclusion of persons living with FTD and drives community engagement across several platforms, including AFTD’s volunteer, support services, education and advocacy programs. She acts as a crucial liaison between AFTD and the external community served by our mission.
Ben C. Freeman | Development & Communications Director
Ben 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.
Christine Stevens, M.B.A. | Chief Financial Officer
Christine 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.
Nadine Tatton, Ph.D. | Scientific Director
Nadine 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.
Deena Chisholm, MPH, CHES | Education Program Manager
Deena joined AFTD in June 2019 as its first Education Program Manager. She is experienced in developing and implementing health education, tools, programs and interventions that promote engagement as well as optimal health and wellness. In her career Deena has worked to develop and implement several new initiatives and research focused on dementia care, violence prevention, medical health education and health equity. In 2016 she received her Master of Public Health degree from West Chester University. Additionally, Deena was inducted into the Beta Xi Chapter of the Delta Omega Honorary Society of Public Health and became certified as a Health Education Specialist by the National Commission for Health Education Credentialing. In her role, Deena will primarily work to advance AFTD’s mission of promoting and providing education for healthcare professionals.
Bridget Graham | Special Events Manager
Bridget joined AFTD in October 2015 as Grassroots Events (GRE) Coordinator and assumed her current position in January 2019. She holds a B.S. in Speech Communication from Millersville University of Pennsylvania. As GRE Coordinator, Bridget expanded and refined AFTD’s national network of grassroots events, managing national branded campaigns and independent, host-driven events that collectively raised more than $1 million in support of AFTD’s mission. In her current role, she oversees AFTD’s annual Hope Rising Benefit and manages major branded fundraising events throughout the year, while also supervising the overall GRE program.
Kerri Keane, M.S.W. | Volunteer Manager
Kerri 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.
Amanda Knight | Development Manager
Amanda joined AFTD as Development Manager in November 2018. She brings more than eight years of progressive nonprofit development experience, including four years with the Greater Philadelphia Chapter of the ALS Association, where she managed donor databases and supported a wide range of the organization’s fundraising efforts. She most recently worked as a development associate with the United Way of Greater Philadelphia and Southern New Jersey, where she assisted major gift officers in high-level donor engagement. As a member of AFTD’s development and communications team, Amanda manages individual giving (including annual campaigns), corporate and foundation fundraising, AFTD’s donor database and foundation metrics, donation processing and acknowledgement, and the expansion of the organization’s digital fundraising.
Bridget Moran-McCabe, M.P.H. | Support Services Manager
Bridget joined AFTD as its first Support Services Manager in May 2015. She holds an MPH from Drexel University. In a career spanning more than 15 years, Bridget has worked to develop new programs and research projects serving vulnerable populations, such as those with terminal illnesses, people experiencing homelessness, children that have experienced trauma, and individuals contemplating suicide. She now works to develop and sustain AFTD’s network of support: providing leadership and training to our wonderful volunteers who allow groups to come together to share their stories, learn ways to advocate, and gain much needed coping skills and strategies. She also works collaboratively with staff and volunteers to provide new avenues for support and resources, and believes until there is a cure for FTD, bearing witness and creating a space for those affected to tell their story is the most important support we can offer FTD families. She is honored to work with all who are sharing their time and talents to do so.
Debra Niehoff, Ph.D. | Research Manager
Debra 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.
Matthew Ozga | Communications Manager
Matthew 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.
Matthew Sharp, M.S.S. | Program Manager
Matthew 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 is integral to AFTD’s patient and caregiver support and education efforts, and is responsible for the development of AFTD’s Grassroots Network.
Jeff Thompson | Office Manager
Jeff 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.
Lauren Martin Gauthier | Online Community Specialist
Lauren joined AFTD in August 2017. Lauren’s career spans 18 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 Specialist, Lauren works to deepen AFTD’s engagement with its community through social media, e-newsletters and other forms of digital communications.
Victoria Addison | Digital Content Writer
Victoria joined AFTD as Digital Content Writer in October 2019. She brings experience working in the media and nonprofit sectors, including three years of professional writing experience in the health advocacy field. As Digital Content Writer, Victoria is responsible for the creation of content for AFTD’s digital platforms to reflect the organization’s emergent knowledge of FTD and full range of work to address the disease. She holds a bachelor’s degree in communications and journalism from the College of St. Rose.
Brittany Andrews | Fundraising Coordinator
Brittany joined AFTD as Fundraising Coordinator in January 2020. She has a B.A. in Marketing from the College of Charleston. She has previous experience working for nonprofit organizations where she gained experience in event coordination and program development. She also has a passion for volunteering and has spent time with the Peace Corps, where she coordinated and facilitated youth-based programs. As Fundraising Coordinator, Brittany is responsible for cultivating, supporting, and implementing national branded campaigns as well as independent, host-generated events.
Jeni Cardosi | Volunteer Coordinator
Jeni joined AFTD in October 2019 as a Volunteer Coordinator. She has a strong background in Human Resources, including recruiting, onboarding, managing programs and supporting both remote and on-site employees. After earning her bachelor’s degree from the University of Florida in 2012, she spent two years volunteering with AmeriCorps, working with FEMA in communities affected by natural disasters and serving as the Volunteer Engagement VISTA at the NH Food Bank. As Volunteer Coordinator, Jeni serves as a primary point of contact for half of AFTD’s extensive volunteer network. Her focus is on engaging and strengthening relationships with volunteers and providing them with the tools and support necessary to be successful.
Annamarie Given | Volunteer Coordinator
Annamarie joined AFTD in October 2019 as a Volunteer Coordinator. She holds a B.A. in English literature and religious studies and brings over ten years of experience in customer service. She most recently worked at a nonprofit, specifically in development and communications, where she managed the organization’s database, processed donations, and created content for acknowledgment letters, direct mail campaigns, and a donor impact report. Her volunteer background includes work with young women impacted by trauma and individuals in hospice care. As a Volunteer Coordinator, Annamarie supports half of AFTD’s vast volunteer network and works closely with the AFTD team to ensure each volunteer’s needs are met.
Elizabeth Graham | Development Writer
Elizabeth joined AFTD as Development Writer in January 2020. Elizabeth has an M.A. in history from American Military University and a B.S. in biological science from Virginia Tech, where she also worked in a lab researching traumatic brain injury. Her previous experience includes working for cultural and medical history non-profits in education, development, and communications. As Development Writer, she is responsible for creating and maintaining AFTD’s development-related communications, as well as researching corporate and foundational support opportunities.
Emma Tomasetti | Development Coordinator
Emma Tomasetti, AFTD’s Development Coordinator, joined the organization 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 Coordinator, Emma plays a key role in donor engagement and support, donation processing, and donor acknowledgement and recognition.
Emily Bradley | Development Assistant
Emily joined AFTD as Development Assistant in January 2020. In this role, Emily supports the Development team with donation processing and assists in donor engagement activities. Emily earned a B.A. in Anthropology from Temple University. She also brings experience from the nonprofit world through her work with Habitat for Humanity, and education coordinating during her service term with AmeriCorps. In addition, Emily has a background in administration and customer service from her prior employment.
Ann Schoonover, M.S.W, L.S.W. | HelpLine Advisor
Ann joined AFTD as HelpLine Advisor in April 2018. She has over 10 years of experience helping individuals and families access resources and services in mental health and healthcare settings. A licensed social worker, Ann has worked in hospitals and skilled nursing facilities; she has also advocated for older adults and caregivers as a geriatric care manager. Ann actively works to maintain and enhance the quality of resources available for individuals seeking support through the HelpLine. She received her Master’s in Social Work from West Chester University and Bachelor’s in Social Work from Eastern University.
Elizabeth R. Young | Executive Assistant/Event Coordinator
Elizabeth 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.