Trevor Salomon (LEAP chair)
Following a rewarding career as a senior international marketer in the information technology space, Trevor Salomon chose to step away from the limelight in 2011 when it became evident that he needed to devote time to his wife and her emerging memory problems. Trevor’s wife was subsequently diagnosed in 2013 with Early-onset Alzheimer’s disease.
Trevor’s approach to dealing with her brain disorder emulated the style that he adopted in his work life, namely, to view obstacles simply as inconveniences which have to be circumnavigated… no ifs, no buts, no choice.
With his wife now being looked after professionally in a care home, Trevor continues to support other carers and always brings a positive, decisive outlook on life. He is a regular speaker at events and in the media, helping to raise awareness about those living with dementia and the challenges faced by family members who look after them.
Jay Reinstein (LEAP vice-chair)
Jay Reinstein is an outspoken advocate for those diagnosed with Early-onset Alzheimer’s Disease. Jay spent 25 years in local government and most recently served as the Assistant City Manager in Fayetteville, North Carolina.
Jay was appointed to the Alzheimer’s Association’s National Board of Directors in Chicago where he served until October 2021. Jay was also selected to serve as a member of the Alzheimer’s Association 2019-2020 National Early-Stage Advisory Group. Since being appointed to the Alzheimer’s Board of Directors, Jay has appeared in articles with the NY Times, Washington Post, Boston Globe, Politico, The Economist, Chicago Tribune, Bloomberg News and Parade Magazine, to name a few.
Paul Harvey
Paul Harvey was diagnosed with Lewy body dementia with Parkinson’s in January 2018 at the age of 47. Over the five years following, Paul volunteers with the Alzheimer’s Society and is part of a cohort assembled to co-create a new service in mid and south Essex, in addition to his role as a Lived Experience Advisory Panel (LEAP) member for the Longitude Prize on Dementia. Paul views his role on the LEAP as representing those who have a dementia diagnosis.
Ian Goldman
Ian Goldman worked as an I.T. business analyst for Sanofi Pasteur until 2010, where he coordinated teams of scientists and technologists in evaluating and deploying software to improve processes. Born in Leeds, UK Ian “distance managed” care to his Mum for 8 years, liaising with a range of dementia care providers. Ian’s volunteer experience includes working in various senior centres and tutoring clients with a range of tech literacy on how to use devices and apps (e.g. WhatsApp, Facebook, Twitter, Google products). This enables seniors to stay connected with their family and continue pursuing their interests.
Ian has also acted as a co-facilitator for the Minds in Motion program for Alzheimer’s Society Toronto. This provides both physical and mental exercises for people living with a dementia diagnosis, and their care partners, in a social setting. Since 2016, Ian has provided lived experience to several research and innovation projects, for technologies that aim to improve ageing and caregiving, and has collaborated virtually with groups across Canada.
Ian loves to travel, learn, and share his insights with those that he works alongside. He holds a degree in Natural Sciences for Chemical Engineering from Cambridge University.
Monica Downer
Monica Downer was a Special Education teacher for 19 years. In her prior career, Monica was a Computer Specialist for the Census Bureau.
Monica’s dementia journey began in 2016 when she was diagnosed with Mild Cognitive Impairment (MCI) with Moderate Memory Loss. In 2020, Monica was diagnosed with Frontotemporal Dementia (the behavioural variant of MCI). A year later, Monica’s PET scan no longer indicated FTD and she has been on the path to a diagnosis since then, with each doctor providing a different cause for Monica’s cognitive decline. The reasons range from depression to anxiety to lupus. Monica has two sons and has been married for 27 years.
Dr Jennifer Bute
Dr. Jennifer Bute was a GP for 25 years, during which time she was involved in medical education and worked as a voluntary doctor in Africa. In 2009, Jennifer was diagnosed with dementia and resigned as a GP. Jennifer now lives in a dementia inclusive retirement village as she is no longer able to manage by herself.
Since her diagnosis, Jennifer has devoted her time to showing more can be done to improve the present for those living with dementia (she is still learning).
Check out Jennifer’s website.
Hilary Randall-Grace, CA, CPA
Hilary Randall-Grace is a retired professional accountant with a passion for the elderly. Her professional career spanned close to 40 years in Quality & Cultural, Strategic, and Operational Risk Management Consulting, as well as in Internal Audit, Compliance, and Governance. Latterly as Director, Quality and Risk Management at Deloitte Canada she was responsible for the firm’s in Ethics, Client Service, Policy Administration, Training and Compliance.
As an only child, Hilary experienced the complex and emotional challenges of caregiving while looking after her parents (one with dementia, the other with physical decline) for eight years while working and raising a family. Upon retirement, Hilary obtained a Graduate Certificate in Gerontology (with Honours) and has since devoted her time to volunteer activities relating to older adults with dementia and ageing.
She currently volunteers as a Facilitator, Spousal and Adult Children Caregiver Support Groups for the Alzheimer Society of Toronto. She is actively involved with the Centre for Aging & Brain Health Innovation (CABHI), Baycrest as Co-Chair Senior Advisory Panel; Volunteer Lead, Community Engagement; as well as being involved in multiple working groups as a lead or participant. Prior to COVID, Hilary led recreation one day a week at local long term care facilities, including Christie Gardens (Adopter of the Eden Philosophy).
Hilary is married with one son and loves dogs, travelling, cooking, and gardening.
Mark Roberts
Mark and his wife, Brenda, live in Michigan with their daughter and her family. Together they reside in a dementia friendly home specifically designed to meet Mark’s current and future needs. The National Council of Dementia Minds is the first national non-profit organisation in the United States founded and governed by persons living with dementia, where Mark is a founding member and serves on the Board of directors.
Throughout his life Mark has worked as a skilled tradesman in heating, air conditioning and construction. For decades Mark has served his church and community with active involvement on various Boards of directors for non-profit and human service organisations.
Today, Mark serves as a national dementia advocate and speaker. He especially enjoys being a friend and source of hope for persons newly diagnosed. Mark is easy to spot in a crowd because of his constant companion and dementia service dog, Sophie.
In 2014, Mark was diagnosed with Early-Onset Vascular Dementia at the age of 62.
Martina Davis
Martina Davis lives both proactively and humorously alongside her Posterior Cortical Atrophy (PCA) diagnosis.
With a business background she has been self-employed, in partnerships and also as Company Director; not only developing her own business, but supporting new businesses by working alongside Board members.
Martina’s proactive involvement started with Rare Dementia Support (RDS), where she contributed to webinars and one to ones, which opened up a whole new world for Martina.
Taking part in an RDS creative pilot inspired her idea for a book of illustrated poetry called “A Life in the Day of PCA” based on true lived experience, humour and various perspectives. The book is being published by The National Brain Appeal.
Since her diagnosis in December 2019, Martina is actively involved in several steering groups, peer support groups and is a member of 3NDWG where she has spoken on webinars. Martina is committed in her involvement where opportunities arise within The Alzheimer’s Society and other organisations.
“Learning to live with dementia is a huge learning curve but when reaching that magical moment of acknowledgement and acceptance you know you can start living your best life again, as the final words in her book say – “Life is not a Rehearsal”.
Sarah Giles
Sarah previously worked in the financial services before leaving to care for her mother, who has a diagnosis of vascular dementia. During this time, Sarah studied computing, technology and design with the Open University; Sarah is passionate about improving the quality of life for those living with dementia by harnessing technology and design.
Currently, Sarah is a Public Advisor in the digital theme for NIHR Applied Research Collaboration Kent, Surrey and Sussex (ARCKSS) in addition to a lay research advisor for the Kent Research Partnership.
Amanda Ediriweera
Amanda Ediriweera has been a carer for her 86-year-old mother for almost 3 years, since her diagnosis of Alzheimer’s disease. Amanda retired from her previous role in the NHS as a Principal Clinical Psychologist working in adult mental health, in part to help care for her mother.
Amanda’s role as a carer has been a challenging journey as her mother’s disease has progressed, however she has applied her professional knowledge to make her life as comfortable as possible. This has included taking part in research, using technology where available and using online carer support and education (from a number of international sources), especially during the pandemic.
Adele Ostfield
Adele Ostfield was Vice President of Human Resources for an international pet food and supplies distributor. Upon retiring from this position in 1999, she resumed her prior career as a Human Resources and General Business Consultant where she worked with a variety of companies and industries.
Since fully retiring at the end of 2019, she has been able to indulge her passion for technology. She is now an active volunteer, assisting older adults and those with mild cognitive impairment to use technology to enhance their lives. Adele is committed to exploring innovations and solutions that enable all people to age peacefully and live a full and meaningful life. Adele has an HBA from the Ivey School of Business and an MBA from York University.
