Tracey has been a member of the WORLD FTD United Executive Committee since its inception.  She has served as Chair of World FTD United since 2018, taking over from our founder Helen-Ann Comstock.   

Tracey has worked as a clinical neuropsychologist for  40 years. She has a passionate interest in FTD, having worked extensively with people with FTD and their families.

In 2008 Tracey was awarded a Churchill Fellowship to study frontotemporal dementia in the leading FTD clinics in the United States and England.  As a result of her fellowship, she established the first support group for carers of people with frontotemporal dementia in Victoria. She continues to facilitate FTD Carer support groups in Australia.  

Tracey is a member of the Board of the Australian Frontotemporal Dementia Association (AFTDA).

 

Margaret has served a member of World FTD United’s Executive Committee since 2019. Her background is as a clinical psychologist, having worked with families, children, and adolescents. She became interested in FTD when a dear friend was diagnosed with behavioral variant FTD and subsequently died from the disease. She worked as the FTD Coordinator for Dementia Australia for 2 years. Since 2018, she has been facilitating an FTD Carer Support Group in Tasmania and organises meetings where FTD Carer Support group facilitators meet as a national team.

She looks forward to the World FTD United executive meetings as a good humoured and productive highlight for her each month, as the executive plans World FTD Awareness week and other activities to raise awareness of FTD internationally, and to build international links between FTD organisations

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Helen-Ann is the founder of The Association for Frontotemporal Degeneration (AFTD). Her husband, Craig, was diagnosed with FTD at age 44 in 1978, and died seven years later. In order to increase research funding for frontotemporal degeneration and to provide information and support to those coping with FTD, Ms. Comstock formed the AFTD in 2002 and served as its board chair until 2010.

Ms. Comstock continues to spearhead the organization’s international efforts and serves on the Executive and Governance Committees. She served as founding chair of World FTD United from its inception until 2018.

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Ben is VP of Partnerships and Engagement for PHI (PHInational.org), a national organization working to improve direct care jobs, to improve the quality of care for people and families across the United States.

Ben built a passion for the global FTD community during his time at AFTD (2015-2024). He led development, marketing, communications, and public education efforts as the organization scaled from 10 to 50 staff, and brought FTD awareness to millions. He has played a strong creative role in supporting World FTD Awareness Week since it was established in 2015. 

Laura is the vice president of AIMFT, the Italian FTD Association.
She is highly active in trying to spread awareness of the disease in the community.

Laura is especially interested in social issues related to FTD, such as quality of life, access to care, and needs related to the work and social security status of people facing this disease.  

As a criminal lawyer, she is advancing her study of criminal behavior in FTD. Joining in 2020, she is the newest member of the World FTD United Executive Committee, where she was welcomed into a global family.
 

Hendrik-Jan is chair and founder of the Dutch caregiver organization, FTD Lotgenoten, and member of Dutch FTD Expert Group.
Since his mother was diagnosed with FTD 25 years ago, Hendrik-Jan has been active raising awareness, sharing information, and speaking up on behalf of this special group. All these years, Hendrik-Jan has been in close connection to national and international FTD specialists, to ensure that the latest information is available for those who are struggling.

Knowing personally the complex challenges that can come with FTD diagnosis and caregiving, Hendrik-Jan's hope is that no one has to go through alone, as it is difficult enough in itself.

 

Nikki sits within the Executive Committee at Rare Dementia Support (RDS), a UK-based service provided by the UCL Dementia Research Centre. RDS supports families affected by 7 of the rare dementias  

Her role involves managing new developments within RDS, leading on direct support and as PPI Lead within research, ensuring members’ voices are visible, and that opportunities are available in education, research, and media settings.  Along with support for members and health professionals, her role also entails organising annual seminars and conferences along with regular educational webinars.

She works closely with clinical leads and through networks educating health care teams on rare and inherited types of dementia. She represents RDS at media events sharing knowledge and working with media teams.
Her academic background is in Sociology and Public Health, and she previously worked for the Alzheimer’s Society. She cared for her father, who had young onset dementia.
 

Sharon serves as Senior Director of Programs at The Association for Frontotemporal Degeneration (AFTD) where she has worked since 2008.  She has appreciated Helen Ann Comstock’s commitment to international awareness and followed World FTD United’s growth for many years.  Beginning in Spring 2024, Sharon is delighted to join the wonderful Executive Committee to become more deeply involved.

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Sharon is a passionate advocate for people living with FTD and their families. At AFTD she has worked to expand support for people diagnosed and their families, educate healthcare professionals and expand public policy advocacy.  Current priorities include increasing awareness and access to diagnosis, and expanding engagement of currently underserved communities in shaping services and to advance research.  

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Sharon has a master’s degree in clinical psychology and nearly 40 years’ experience in program development with nonprofit organizations that serve people with cognitive and behavioral disabilities. 

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