Hello, Lewy Warriors!

Welcome to October! We’re sorry for the delay in writing and sharing this blog. Unfortunately, I’ve been sick for the last week or so. Now that I am back to full health, let’s take a look back on the month of September and share some of the things we’re working on for this month and the rest of the year.

​First and foremost, our Loonie Loops event for 2026 has concluded! The walk itself was wonderful, and our coffee and snacks at Café 22 following the walk were fantastic. It’s always great to connect with members of our advisory board, community, friends, and family. We wanted to say thank you to everyone who supported our walk this year, in whatever way you could. We were so heartened by the support we received in the form of messages, donations, and encouragement leading up to, and after, the walk. We also appreciate everyone who joined us on the walk and all the people we got the chance to speak to while walking the Loops. A huge thank you to Dani for hosting us afterwards.

Unfortunately, we do not know how much we’ve raised just yet, but we will a little later in the year. For now, we are just grateful for another fantastic walk. Thank you to everyone involved.

​On the topic of donations, we are eagerly awaiting our semi-annual donation total update and cannot wait to see where we are at the end of 2026. If you would like to support LBD research in Ontario and help us reach the next major donation milestone ($150,000), you can donate online by visiting the link (or by following the instructions for other methods) found on The LBD Research Fund & Donations page. All donations go directly to Dr. Pasternak and his team’s LBD research at the University of Western Ontario and help them continue their work. Speaking of Dr. Pasternak, he joined us on our Loonie Loops walk, and it was wonderful to hear about what he’s been up to. We appreciate him taking the time to walk with us and hope to give you more updates on his research in the near future. Safe to say, though, that your support has helped continue the research into LBD.

Going into the end of the year, we are once again choosing to forgo an online fundraiser and are instead asking people to donate directly to Dr. Pasternak’s LBD research fund to help Lewy Body Dementia research in Ontario. If you would like to support through merchandise purchases, we still have limited inventory of the CLBDI winter hats available to purchase. Visit the Community page of our website to learn more.

With that being said, we may have another giveaway in the works, and want to celebrate closing out another fantastic year of CLBDI. You'll have to wait until next month to learn more.

Also in September we added more to our LBD Resources page (including some new books added to our book list), continued to build our connections across the globe, and championed local initiatives and events that help you stay connected, educated, and informed. It has been so wonderful to see the community evolve and grow. We're so happy to see the avenues of support and the flow information widen.

Coming in October, we have new instalments of all our series, including CLBDI Talks, CLBDI’s Care Partner Tips, and CLBDI Reviews. Some of these were originally scheduled for a September release, but were delayed due to illness, and we can’t wait to share everything we have been working on. We are also gearing up for our next art show, which will happen before the end of the year. We are still looking for artists (any medium, any skill level) who want to join this event and help us make a difference. If that sounds like you, send us an email at canadianlbdinfo@gmail.com. You can expect some more updates on the show as we move through the coming month. Plus, more advocacy, more connections, and more information!

That’s all from us for September. We wish you all a wonderful October, a Happy Thanksgiving to all who celebrate, and a Happy Halloween.

Best,
Joe

Hello, Lewy Warriors!

​The summer is coming to a close and we're gearing up for an exciting fall. We hope everyone has had a fantastic summer and that your Labour Day long weekend is full of relaxation and fun before returning to real life. Let's take a look back on August and a look ahead at the coming months together. 

Firstly, we are excited to share that we have formally announced the next Loonie Loops walk! Join us on September 26th in Uptown Waterloo to walk the Uptown Loops for LBD awareness and to promote CLBDI's mission. Last year's walk was so much fun that we knew we wanted to do it again this year. No donations needed. All are welcome to join the walk and we encourage you to connect with other Lewy Warriors, our community, and the CLDBI team. More information, including the walk schedule and our community partners, is coming in the very near future. Keep an eye on our social media for more updates.

We hope that you will consider joining us. Together, we can make a difference.

If you would like to donate and support, visit The LBD Research Fund & Donations page of our website to learn how. Every dollar donated goes directly to Dr. Pasternak and his team's research into LBD at the University of Western Ontario.

We are also in the final stages of planning and putting together our next CLBDI Talks guest(s) and episodes, and we hope to be launching the new season of interviews in September. We're so excited to bring this series back and hope you will tune in on our YouTube channel. You can already watch all nine of our previous episodes here, if you haven't already.

Earlier in August, we released another instalment of our Care Partner Tips series! This time, we shared some thoughts from our Advisory Board member, Joe, on combating isolation and the importance of social connection, which you can read below.

"Humans are social creatures, but when the stress of caring for someone becomes overwhelming, we often retreat from social connections to minimize further stress. Sometimes, we feel like we’re alone in our struggles and have nobody who can relate. In other cases, we may self-isolate to shield others from our vulnerable moments and emotions, or from having to explain the realities of our caregiving situation. Unfortunately, any of these can lead to further isolation and leave you feeling even worse. So, what can you do? It may seem simple, but talk to people.

​One thing that helped Joe during his time as a care partner was having someone he trusted to talk to about everything he was facing and feeling. He also made an effort to stay connected with his friends, family, and community. In his case, he sought professional support to help him work through his feelings and provide guidance when needed.

Today, there are many ways to find support, including professional mental health services, local counselling agencies, social work and dementia related organizations, your care team, and government resources. Many offer flexible payment options, subscriptions, or one-time fees. If professional support is not the right choice for you, perhaps you have a trusted friend or family member who can fill that role. You can also seek out online support groups created specifically for people living with dementia and those caring for them.

At the same time, it is important to maintain your connection to your community and the wider world around you. Making time to talk with friends and family about normal, less stressful things can help you stay grounded and remind you that you are not alone. It reinforces that you have people who care about you and enjoy spending time with you. It gives you a chance to be yourself, have a laugh, and feel connected.

Whatever the case, having someone to talk to, whether about how you feel and what you’re dealing with or simply to chat, can help you maintain your balance as you navigate the daily challenges of being a care partner. After all, no man is an island, as they say.

Don’t neglect your social and emotional needs. Talk to someone. You’ll likely find that you’re not as alone as you think."

Also in August, we shared the news about a new LBD event happening nearby! The "Lewy Body Dementia Symposium: Grounded in Lived Experience" event is happening in Windsor, Ontario, on September 19th. This symposium "brings together people with lived experience, healthcare professionals, community organizations, researchers, and advocates for an afternoon dedicated to learning, collaboration, and meaningful conversation."

Want to learn more and get tickets? Click here.

We also added new books, new links, and more resources to our LBD Resources page. So, if you haven't checked it out lately, make some time to revisit it this month! We're always adding resources that we hope you find helpful as you navigate your Lewy Journey or want to learn more about LBD. Plus, if you think we're missing something, let us know! We love to hear from our community and are more than happy to add something that we've missed.

Later in September and October, we hope to share more information on the next CLBDI Art Show and our plans for the holiday season. For now, we're wishing you a wonderful end of your summer, and all the best in September.

Best,
Joe

Hello, Lewy Warriors!

The summer is flying by and, just like that, August is already upon us! It’s time to take a look back at the past month and look ahead to all the great things we’ve got coming in the near future! Before we start, we hope everyone has had a wonderful summer so far, and we thank you for your continued support.
​
Firstly, we are thrilled to share that we have a new donation total from our friends at the University of Western Ontario. I am so pleased to share that we’ve raised $146,677.75 for LBD Research at UWO. Incredible! Because of your donations, Dr. Pasternak has been able to hire more students to aid in his research. We’ll have more from him expanding on exactly how your donations help and the state of their projects in the near future. For now, we just want say thank you to everyone who has supported us. Together, we are making a difference, and we can’t wait to see where we will be at the end of the year. Perhaps, we’ll be able to say that we’ve surpassed our next major donation milestone of $150,000. Amazing!

As always, you can find out more about making a donation and the link to donate online by visiting The LBD Research Fund & Donations page.

July was also a month of meeting and planning with the Advisory Board to prepare for the coming months. We’ve now decided on September for our next “Loonie Loops” event, and we couldn't be more excited. We’re hoping to host two (or more) walks across Ontario to raise awareness and funds for LBD research. We’re currently looking to connect with businesses, people, and organizations who want to help us through promotion, partnership, and collaboration. If you know of anyone who might like to get involved, specifically in the Kitchener-Waterloo and Ottawa regions, send us an email at canadianlbdinfo@gmail.com.

We’re also still accepting submissions for our next art show, which will be happening in October or November of this year. If you’d like to be involved, or know an artist who might want to join the show, please send us an email.

As for August, we’re working on a new episode of “CLBDI Talks”, additional instalments of “CLBDI Reviews” and our “CLBDI Care Partner Tips” series, making new connections and embarking on some exciting collaborations, and a whole lot more. Plus, we'll be giving you updates on “Loonie Loops” including the date, time, location(s), and how you can get involved.

As always, we continue to update our LBD Resources page and share LBD-related articles, links, and updates on our Facebook page. If you haven’t yet followed us, click here to give us a follow. It’s the best and easiest way to stay connected between these blog posts.

We hope everyone has a wonderful August. We’ll see you in September.

Best,
Joe

Hello, Lewy Warriors!

May has come and gone! We hope everyone had a wonderful month and you're ready for the sunshine and warm weather of summer. We've got a few things to share, so let's get right to it!

This month included our first local LBD presentation in a while and it feels good to be back! We're so grateful to be back out in the community and sharing the good word about CLBDI, educating about LBD, and advocating for Lewy Warriors! Would you like us to come and speak about Lewy Body Dementia? Send us an email at canadianlbdinfo@gmail.com!

​Hot on the heels of our recent surprise donation total update, which put us at a whopping $141,562.75 raised, we're rapidly approaching the transfer of funds from the Robert Edward Schmidt Trust to the research team lead by Dr. Pasternak at the University of Western Ontario, and our regularly scheduled biannual donation total update! If you were looking to do some good this year, now is a great time to make a donation. It will be included in the update and will help us inch even closer to our next donation milestone... $150,000! Plus, you'll get a tax receipt that you can claim on your taxes next year! If you would like to make a donation (be it online, over the phone, by mail, or something unique to you), visit The LBD Research Fund & Donations page of our website. All the information and links you need can be found there.

​In May, we dropped another book review as part of the CLBDI Reviews series! This month, Carol reviewed "Lewy Who? III: The Long Goodbye" by fellow Lewy Warrior, Janet Johnstone. If you'd like to learn more about Janet, check out the episode of CLBDI Talks on our LBD Resources page or our YouTube channel where she sat with us to talk about her late husband, her LBD journey, her writing, and more.

​The review:

"This book was written by Janet Johnstone, who was the primary care partner for her late husband John, and is the third book in her “Lewy Who?” series on Lewy Body Dementia. At the start of the series, John was able to share excellent input on the progression of the LBD that afflicted him, whereas this book focuses on the end of their journey together. I appreciate all three books and recommend people read them. So much so, in fact, that I gave my copies of the first two books to another person who was starting their own LBD journey.

The courage of Janet and John is sure to be seen as amazing to anyone who reads this book. It sure helped me whilst I accompanied my late husband on his LBD journey. The descriptive way Janet and John’s quite long and exhausting journey was told resonated with me. So many of the emotions and feelings were similar to my own.

Janet and John clearly show how each person, couple, and family reacts uniquely to the LBD journey. It also shows how the support systems and resources are unique to that person’s environment and where they live. I loved that this book has a lot of information about resources that people in Ontario and Canada can access. Overall, this book encourages families of Loved Ones with LBD to be informed and proactive."

Want to read it for yourself? Visit our LBD Booklist for a direct link to purchase from Amazon.

We're also happy to share that Carol has completed her new series of paintings for the next CLBDI art show and we are actively planning the event! We're also looking for local, national, and international artists of all skill levels who are interested in joining our show, which aims to advocate, educate, and raise funds for LBD research in Ontario. If you are interested in joining the event, send us an email or a DM on Instagram or Facebook. We'd love to connect with you! We're also actively in the process of planning our next "Loonie Loops" event, which will take place at the end of the summer. As promised, it will be bigger, better, and more fun! You might even see us in multiple cities!

We'll be meeting with our Advisory Board and team in the coming weeks to lock in some of these plans and will have some updates dropping all through the month of June. Make sure you're following us on social media to stay up to date and we'll see you here in a month for a full summary of all the news.

We hope everyone has a lovely June ahead!

All the best,
Joe

Hello, Lewy Warriors,

Welcome to May! We hope everybody had a wonderful April, a lovely Easter (if you celebrate), and that you are enjoying the return of more mild springtime weather. As always, it’s time for another monthly update. Although we didn’t get as much done in April as we had hoped, especially in regard to CLDBI, due to sudden and severe illnesses, we still have plenty to share (and more on the way). Let’s get to it!

Before we jump into our updates, we wanted to take a moment to say thank you to one of our (now former) Advisory Board members and wish them well on their future endeavours. Pastor David Malina has been an integral part of CLBDI since the early days of this project and was consistently a fantastic member of the team. His mission has called him to another part of the province and, as of today, he has stepped away from the board. We wish him all the best and are cheering him on. Thank you for everything, David.

In other news, we received an unexpected surprise in the form of an early donation total update! Even better? We've totally smashed our goal of $125,000 raised! WOW! Our liaisons at the University of Western Ontario contacted us to let us know that we have now reached a grand total of $141,562.75 raised for LBD research. AMAZING!

As mentioned in our original post, we are so grateful to EVERYONE who has been a part of the journey thus far. Whether you have donated your time, your money, or your energy, you are part of the fabric of this community and have helped us reach goals we didn't think were possible. We are forever grateful, inspired, and energized by your support.

Also, our second social media giveaway was a great success! We wanted to thank everybody who joined in and congratulate our winner, Emma, for taking home the prizes. This time, we gave away a CLBDI T-shirt, winter hat, and a Tim Hortons gift card. We hope to host another giveaway later in the year, so keep an eye on our social media accounts!

Hello, Lewy Warriors!

Happy early Easter to all those who celebrate! We hope you all had a wonderful March and are enjoying the first signs of spring. What a lovely day it was today! Let's take a look back at a month of big changes (personally) and look forward to what we've got cooking for April.

March was another quieter month for us here at CLBDI, and for a very special reason! I am happy to share that I've recently married my long-term partner. Between the planning and lead up, the ceremony itself, and the celebrations after... it took up a lot of my time. I also spent some time away after to recover and enjoy the married life. Because of that, there has been a slight delay with our next episode of "CLBDI Talks", but please know that it is still very much in the works and that we plan to share it soon.

Before we do that, we've got another chance for you to win some CLBDI swag, help us grow our presence, and support CLBDI! We’re excited to be launching another CLBDI giveaway later this week, which will run over the Easter weekend and into early April. This giveaway gives you another chance to win a Timmy’s gift card (anyone need an iced coffee?), a CLBDI hat, and a CLBDI shirt! More information will be coming on Wednesday, so be sure to follow along on our social media channels so you don’t miss out!

This past month, we shared the second instalment of the CLBDI Reviews series (once again penned by our founder Carol) on Helen Buell Whitworth and James Whitworth's 2010 book, "A Caregiver's Guide to Lewy Body Dementia". You can read the review in the graphic shared above or in plain text format below.

​The review:

"This book is geared mostly toward Americans and can be dense at times, but it can still be helpful if you want to learn. I would approach some information in this book with caution. Since it is 15 years old, some of it is outdated due to new and ongoing LBD research. Our health care system is also very different from theirs.

What I did like was the general information on dealing with medical professionals and advocating for your Loved One. For instance, their advice on keeping a journal that lists questions and answers is excellent. One needs to be prepared, regardless of where you live, when meeting a medical professional. Being prepared is key to not being overwhelmed. The chapters on caregiving and self-care are also good.

The glossary pages, index, and definitions of the acronyms used throughout the book were helpful. I also liked some of the personal vignettes describing dealing with an LBD diagnosis. Those gave me a more realistic view of how Lewy Body Dementia affects not only the individual, but their family and community."

On the creative side, there is some exciting progress happening behind the scenes. Carol is nearing completion on her next series of paintings, and we are beginning to prepare for our next CLBDI art show. These events continue to be an amazing way for us to raise awareness and donations for LBD research. They are also a fun and interactive way to bring the community together through creativity, expression, and awareness. As we start putting things into motion, we are also looking to connect with local artists who may be interested in getting involved. More information on how to participate will be coming very soon.

We are also incredibly excited to share that we have likely surpassed our fundraising goal of $125,000. We are currently waiting on final confirmation, but this is a huge milestone and a testament to the generosity, compassion, and dedication of this community. Every contribution helps Dr. Pasternak and his team continue their research, which in turn helps support those impacted by Lewy Body Dementia. If you would like to donate or want to know more, head over to The LBD Research Fund & Donations page of our website.

Speaking of momentum, we’re also gearing up to announce the return of our Loonie Loops event this summer. This time, it's going to be bigger and better than ever! We’ve been working on some exciting updates to make this year’s event even more engaging and impactful, and we’ll be sharing more details with you very soon.

As always, thank you for being part of this journey with us. Whether you are here to learn, support, share, or simply connect, you are an important part of this community and we couldn't do it without you. Wishing you all a bright and hopeful start to the spring season.

Best,
Joe

Hello, Lewy Warriors!

Another year has come and gone, and we’re here to recap all the amazing things we’ve done together in 2025 and look forward to what we’ve got cooking in 2026. Before we do that, we wanted to say that we hope everyone had a wonderful December, a Merry Christmas, and a joyful holiday season. As always, the past year at CLBDI was filled with triumphs, challenges, and growth. Given our small project size, we’ve had to adapt and compromise when things didn’t go as planned. Despite the unexpected, we look back fondly on the year, grateful to everyone involved in all the things we’ve managed to accomplish.

The new year began with our CLBDI winter hats and a donation total of $92,722.17. Following the trend of 2024, we continued to promote and emphasize the importance of the CLBDI Advocacy Letter and the strength of grassroots advocacy in our community. Throughout the year, we released new episodes of CLBDI Talks featuring guests like Norma Loeb of the LBD Resource Center, cognitive neurologist Dr. Pasternak, author and Lewy Warrior Mary Lou Falcone, and others. In June, we successfully organized another Loonie Loops walk, raising over $300 for LBD research. Additionally, in July, some of Dr. Pasternak’s LBD research was published and we were overjoyed to shared the news. We also started planning and implementing updates to our website and met with inspiring individuals in the LBD and dementia communities, including Michelle Martin from the Alzheimer Society. We updated our email address, bid farewell to some members of our Advisory Board (Brian), and welcomed Hailey to our team. By the middle of the year, our total donations reached $117,117.05. We continued to actively engage with our community, sharing our mission with anyone willing to listen. Recently, we launched our CLBDI Donation Cards (thank you to Michelle and Marisha from our Advisory Board) and the holiday giveaway, which continues until January 1st. You can still join in on Facebook and Instagram to participate in the draw!

Looking ahead to next year, we have some exciting plans. First, we’ll receive our new donation total in late January, and we can’t wait to see if we’ve surpassed the $120,000 mark together. We’re very excited! Also in January, we hope to have the delayed episode of CLBDI Talks posted, along with most of the website updates finalized. Once those are complete, we’ll upgrade the site to offer French language translation for our francophone community. Nous sommes très excités! We’re also planning more community events, like the Loonie Loops and Community Walks, throughout Ontario. These events will provide more opportunities for people to feel supported and connect within our community. Additionally, we’re working on another online (and potentially hybrid) art show to raise funds for Lewy Body Dementia. More on that soon! We’ll also continue to produce more episodes of CLBDI Talks, video content, and host educational events wherever we are welcomed. As always, we’ll be speaking with MPs, MPPs, and anyone else who’s willing to listen about CLBDI and Lewy Body Dementia in Canada.

We are incredibly grateful for the unwavering support of our friends, family, community, and Advisory Board members throughout the past year. We are hopeful that together we will reach another donation milestone and are excited to be embarking on another year of collaboration and growth. This incredible journey would not be possible without the remarkable individuals who comprise the CLBDI community and their unwavering support for which we are so appreciative. We continue to be humbled by your generosity.

So, from everyone involved at CLBDI, we wish you a Happy New Year and all the best on 2026. We’ll be back at the end of January with a bunch of updates and news.

Best,
Joe