About Lewy Body Canada

Lewy Body Canada is the first Canadian organization solely dedicated to synucleinopathies, including Lewy body Dementia (LBD) and Parkinson’s Disease Dementia. Our singular goal is to provide insights to all those touched by the condition to make their lives the very best they can be. We do this by providing strategic, original content for those living with LBD, care partners, researchers and policy makers. We also provide a hub for resources at www.Lewy.CA, as well as active outreach, education and advocacy on social media and through our allied support groups and their 25,000+ global members.


This Lewy Body Dementia (LBD) website was started for several reasons. Primarily, it is to create an actively curated, non-affiliated source of information for anyone affected by Dementia with Lewy Bodies. I started it to help caregivers better cope with the many tragedies of condition and to learn ways to make things the best they can be, under the circumstances. It will also help maintain the health of all caregivers and their loved ones.

The overall approach has been defined from many years I’ve directed the communications and marketing team for North America’s largest University Faculty, in Canada’s third biggest University. My goal has always been to make complicated concepts easier to understand. I apply the same approach here, based on decades of experience as a professional in both creative and technical roles.

Photo/graphic: Do Your Best Caring for a Loved One with Lewy Body Dementia

I’ve geared this site to be welcoming and helpful to all, and particularly to seniors and those who are not “digital natives.” Too often, websites have a bias towards more experienced users and to those who are comfortable with newer technology. I am going to try to keep this site very simple, fast, clear, and with information that can be used by as many people as possible, wherever they are.

I am so very thankful to live in Canada, and the website will come from a Canadian perspective, but the information is always applicable worldwide. My hope is that collectively, we will all be able to raise awareness globally: as it is, dementia is sadly underrepresented in both public awareness and in political policy. We need to talk about it in an informed manner, and without the stigmas, and fear, shame, misunderstandings, and difficulty of the topic.

I write and produce every word, aspect and element of this website (except two, so far, and both are attributed to their respective authors). There is no source of funding whatsoever. Everything is paid for by me, personally. The content is mine alone, although inspiration and ideas come from disparate sources: I do not claim that it is in any way perfect, but it is 100% genuine.

The perspectives I present are based on my personal experiences as a seven-day-a-week carer for a parent with Lewy Body Dementia over a period of several years. I’ve been highly active in local associations and am highly engaged on social media. I’ve had years in the LBD trenches caring for my lmother. She was diagnosed in 2008, and did remarkably well despite the ravages of the condition, until a very sudden crisis occurred: a “silent” pneumonia from which she could not recover, landing her in the ER, then the ICU, and spending her last moments surrounded by her loving family on August 3, 2016. Grace fulfilled, but missed always.

Here’s to making the journey a little less dark. And towards a lessening of the terrible costs of Lewy Body Dementia: to the individuals who are assaulted by it, to those that care for them, and to the societal and health-care costs it brings.

Towards increased awareness, knowledge, strength and progress!

 

Strength and courage to all.
Timothy Hudson
, Founder, Lewy.ca


About Timothy Hudson:

  • Cared for family member with Lewy Body Dementia (LBD) for 8 years, to 2016.
  • Co-founding Canadian partner of Lewy Body International, with national representatives from 11 other countries
  • Lewy Body Dementia International conference presenter, Newcastle, UK, June 2022
  • Published hundreds of news summaries and scientific developments to provide simple, searchable LBD summaries to 3,000+ followers. Beginning re-launch as LewyCan on Facebook
  • Co-administers the world’s two largest online LBD support groups with 25,000+ participants for care partners and a mixed group
  • Launched first Canadian LBD-specific website for education and advocacy in 2015, Lewy.ca
  • Elected inaugural co-chair of the American Lewy Body Dementia Association‘s Living with Lewy Advisory Council, spring 2019
  • Provides LBD education and advocacy globally
  • Engages and builds online communities for people living with LBD
  • Runs a communications and marketing consultancy for 25+ years
  • Has extensive experience with associations, not-for-profits, tech startups, government, higher education, more.
  • Was Director, Strategic Communications at Canada’s 3rd largest University.

Updated December 30, 2024