Hello Lewy Warriors!

We hope that everyone had a wonderful November. We're rolling into the last month of the year and holiday season with plenty to discuss and share, so let's get right to it.

​In case you missed it, The final CLBDI Talks episode of 2024 is now available on the CLBDI YouTube channel (https://www.youtube.com/@canadianlbdinfo). It features a lovely conversation with our founder Carol Schmidt on the last five years of CLBDI, the future of our project, and much more. It also features an urgent call to action for all Canadians from Dr. Stephen Pasternak. There is a lot to do, but together we can get the conversation going and move the needle. Need a place to start? Check out the CLBDI Advocacy Letter 2024. 

We will be back in 2025 with more guests, more video content, and more great conversations. Thanks to everyone who has been involved from the guests to the viewers. You can watch all six episodes from this past year for free on our YouTube channel.

Speaking of action, we've got a lot planned for 2025 including the start of our LBD Support Groups and more speaking presentations. We're also planning an updated webinar, more video content, more community events, more LBD presentations, and growing our presence across Ontario. Keep an eye out for updates on our social media accounts through December and into January as these plans begin to materialize and solidify. You can hear a little bit about our plans for the LBD Support Groups in the latest episode of CLBDI Talks.

This year, we have decided to forgo our usual Holiday Fundraiser for combination of a push to donate and new CLBDI merchandise. We will be getting the final donation total for 2024 in early January so there is still time to make a difference (and get a tax receipt) this year. In early 2025, we'll be sitting down with Dr. Pasternak to hear about all the ways your donations are helping the lab to study and understand Lewy Body Dementia. We are also only a few days away from the unveiling of the new CLBDI winter hat which will be available for purchase online in just a few weeks. Much like our first run of merch, half of all sales will be donated to Dr. Pasternak's LBD research so you can look good and feel good. We can't wait to see how they look on you!

Want to learn more about donations or make one yourself? Click here: The LBD Research Fund & Donations

​In November, we had some more great experiences speaking in the Waterloo Region and appreciate everyone who came out to hear what we had to say. Our last seminar was packed and such an engaging and wonderful experience for us. We got a chance to share our story and hear some of yours, heard some new and wonderful questions, and connected with new community members and Lewy Warriors.

This past month, Carol also did the first of her planned "Loonie Loops" walks in Uptown Waterloo. She walked all three of the Uptown Loops to raise awareness about Lewy Body Dementia and raise funds for CLBDI’s cause. She wanted me to thank everyone for sharing, donating, and supporting her on her walk. She also wanted to remind everyone that you can still make a difference in your community - even at 84 years old!.We received such wonderful and enthusiastic responses from the community. We cannot wait to get out in 2025 and do more in our region and all across Ontario.

Hello Lewy Warriors!

Happy (early) Halloween and Happy (belated) Thanksgiving! We've come to the end of another month so here is your monthly update on all things CLBDI. We hope everyone had a wonderful October.

Last week, we celebrated five years of CLBDI! Can you believe it? A small group of friends and family gathered for cookies, warm drinks, and a walk down memory lane. It's been an amazing five years of growth, learning, meeting and building connections with Lewy Warriors, and making a difference. From our various online and in-person art shows to our fundraising to our interviews to our Community Walks... we've had such a fantastic time and can't wait to see what the future holds. We'll be sharing a very special fifth-anniversary episode of CLBDI Talks with our founder in early November so make sure you subscribe to the CLBDI YouTube channel (www.youtube.com/@canadianlbdinfo) to be notified when it drops.

We also wanted to thank everyone who has been a part of this journey over the past five years. Thank you to all our Advisory Board members past and present, the staff at UWO, the amazing people we've met in our community, all those who have donated, and everyone else who has been involved in any way. We are so grateful to each and every one of you.

As we enter the final stretch of the year, we're so happy to announce that we've surpassed our expected fundraising goal for the year and are now above $80,000 raised in total for LBD research in Ontario. We're absolutely overjoyed and can't wait to see where we are in January. We definitely couldn't do it without the support of our amazing community so, as Carol always says, "Merci mille fois!"

Speaking of fundraising, Carol will be walking the "Loonie Loops" next month in Uptown Waterloo to raise funds and awareness about Lewy Body Dementia. We'll be announcing dates and information in early November. You can support by joining her on a walk, donating to LBD research, or sharing our posts!

Want to support? Visit the The LBD Research Fund & Donations page to learn how and make a donation!

Also coming in November will be the designs for the next run of CLBDI merchandise - warm winter hats for the colder months! They'll be available in December and will make a feel-good Christmas gift as half of all the money from sales will go directly to Dr. Pasternak's LBD research at UWO at the end of the year. Follow us on Facebook to get an early look the design and the information on how to make an order.

Well, that's all from us for October! We hope everyone has a fantastic Halloween and we'll be back in November with information on our LBD Support Group, our holiday plans, and more.

Best,
Joe

Hello Lewy Warriors!

We hope everyone had a wonderful summer and you're all ready for the holiday season. We are so excited to enter the last quarter of the year and have lots to update you on and announce. Let's get right into it!

Firstly, we have released a new episode of the "CLBDI Talks" interview series on our YouTube channel. This month, we sat with Michelle Martin, Executive Director of the Alzheimer Society Waterloo-Wellington, to talk about the Alzheimer Society, their two Landmark Studies on dementia, and the future of the disease in Canada. This was a wonderful and interesting conversation that also covered a wide variety of subjects including how the Alzheimer Society operates, what they offer people in the region and across Canada, advocacy, education, support, and so much more. You can watch it above or on our YouTube channel! We've got another episode coming in October featuring a conversation with our founder Carol Schmidt about CLBDI, our journey, and the future.

We're celebrating five years of CLBDI this October with a small celebration, more CLBDI content, and more ways to support. Our founder will soon be walking what she dubs the "Loonie Loops" in Uptown Waterloo to raise awareness about and donations for LBD research in Ontario. We will be posting updates on our Facebook and Instagram, so be sure to check us out and give our page a follow.

Want to donate and support LBD research in Ontario? Click here: The LBD Research Fund & Donations

We also have new merchandise coming very soon, if that's something you're more interested in. You'll soon be able to get some spiffy new CLBDI toques to keep your head warm this winter. Plus, with the holidays coming, they'll make a wonderful Christmas gift that you can feel good about. Half of all sales goes directly to Dr. Pasternak and his research team at UWO. More information, including pricing and design, will be released over the coming months.

We are also working to create a local support group for LBD patients and caregivers to connect, share stories, and find other Lewy Warriors in the Waterloo Region. If all goes well. we plan to expand to online support groups as well. This initiative won't launch until 2025 but we're so excited to offer a place for people to find support and community locally. Keep your eyes peeled for more updates as we get closer to the end of the year.

Lastly, we urge everyone to check out our CLBDI Advocacy Letter 2024 and consider sending a copy to your MPs and MPPs. If you've been following what's been happening with LTC homes and medical/support workers in our province, you will realize how important it is to start the conversation and call our politicians to action to improve the systems of support for people with dementia. It's only going to get more challenging from here and these discussions should have started years ago. Join the chorus of voices asking for accountability, change, and support from our politicians today.

That's all from us! We hope everyone has a wonderful October and we'll see you in a month.

Best,
Joe

Hello Lewy Warriors!

August has come to a close and, as usual, we're taking a moment to look back on the past month and forward to the future! First and foremost, we hope everyone has had a tremendous summer and you all get a chance to enjoy yourselves over the long weekend.

August was mostly spent preparing for the various exciting things we have planned for the fall but, thankfully, we did get out and about in Uptown Waterloo for our Community Outreach Walk! It was a wonderful Saturday afternoon spent in Waterloo. We met some fantastic people and connected with some amazing businesses in the region. If you keep an eye out, you might even see some of our flyers posted in some of your favourite establishments. Do you want some flyers to place at your work? Send us an email! We'd be happy to speak with you and make it happen.

The next CLBDI Talks interview is going to be releasing mid-way through the month and will feature a very special guest to talk about a fantastic program in our region and across Canada. We cannot wait to share it with you! Following this, we'll have a very special five-year anniversary episode with our founder Carol to look back on CLBDI's journey and everything we've done in the past five years. You can catch up on all the old episodes of CLBDI Talks here:

https://www.youtube.com/@canadianlbdinfo

Speaking of our five-year anniversary... we will definitely be doing something to celebrate in October! Keep an eye out for more information about how you can join in on the celebration and for special online anniversary event announcements and content!

With fall just around the corner, we have begun planning for this year's holiday season and will definitely be doing some sort of holiday fundraising event this year. We've also been feeling like it's time for new merch! Perhaps something for you to wear as the weather gets colder? More information on that will be available at the end of next month.

Lastly, we wanted to wish a fond farewell and best wishes to Ashely Irvine, our liaison at UWO, who will no longer be working with us. We deeply appreciate all her support and everything she has done for CLBDI. It's been our pleasure. We also wanted to welcome our new liaison, Tommy, and mention that we've updated the contact information for donations on our site. We're looking forward to working with her going forward.

That's all for us! Have a fantastic September!

Best,
Joe

Hello Lewy Warriors!

We hope everyone had a wonderful July and your summer has been pleasant so far. We've had to take most of July off due to some unexpected complications outside of CLBDI but we do have some good news to share and plans for the rest of the summer and fall.

First and foremost, we received our new donation total from our liaisons at UWO. As of early July, we've raised an astonishing $73,707 for LBD research in Ontario. Fantastic! Amazing! We cannot thank our community members and supporters enough. Because of your generosity and support, we're making a tangible impact. Furthermore, we're hoping to have a more in-depth update on the use of these funds and a look behind the scenes when we visit the lab sometime in the next few months. We'll get another update at the end of the year and are hoping to surpass our next goal of $75,000 by 2025. If you would like to donate online or via phone/mail to help us get there, click this link: The LBD Research Fund & Donations

You might notice that we've added some more links and resources to our LBD Resources page over the last few weeks. We have plans to expand and update the site over the coming months to make it more intuitive, interactive, and easier to navigate. More details on that soon.

In August, we'll be heading to Uptown Waterloo on what we're calling our "Uptown Community Outreach Walk". That's basically a fancy way of saying that we're getting out in the community to do some on-site promotion through education and outreach. We'll be walking all throughout the city, so if you see us... say hi! We'd love to tell you about CLBDI and answer any questions you might have about Lewy Body Dementia, CLBDI, and dementia in Canada. Check out our Facebook page (www.facebook.com/CanadianLBDInfo/) for more information on when and where we will be. We're working on the next CLBDI Community Walk event for September and planning something exciting to celebrate 5 years of CLBDI in October.

Later in the month, we will be hosting our first online hangout and Q&A session along with sharing our plans for more online events throughout the year. We're also hoping to have the next episode of CLBDI Talks available on our YouTube channel by the end of the month or in early September. Have checked out our YouTube channel yet? Click the following link to visit our channel and watch all the previous episodes:

https://www.youtube.com/@canadianlbdinfo

Don't forget that we have our CLBDI Advocacy Letter 2024 template available for free in multiple formats on our website. Use it as is or make it your own, the choice is yours. It's a quick and easy way to get the conversation about the future of dementia care started with your representatives.

We also have some updates to our Advisory Board and other plans for the fall and holiday seasons to share. You can expect to hear more about that in the next blog post. For now, we just want to wish everyone a fantastic August.

All the best,
Joe

Hello Lewy Warriors!

Happy (early) Canada Day and welcome to July! This year is flying by! We hope everyone had a fantastic June and you are all going to enjoy the long weekend. We have a relatively quick update for you this month so let's get right to it.

This past week, we released the fourth episode of our "CLBDI Talks Interview Series" on YouTube. In this new episode, we were joined by Advisory Board member and Pastor David Malina to talk about faith-based support systems for people dealing with dementia, his own experience with neurological diseases, spirituality, and his time with CLBDI. It was a warm and wonderful conversation and we appreciate him taking the time to speak with us. Thank you, David. You can watch it in this blog post (located above), on our LBD Resources page, or on our YouTube channel. Don't forget to subscribe!

The next episode will be available before the end of the summer. Keep your eyes peeled for announcements on our Facebook page as we get further into July and August.

In July, we will be getting our bi-annual update from our liaisons at UWA on the new donation total! We're very excited to see how much we've raised. This also means you have a few more weeks to donate and help us surpass our next goal. All money raised goes straight to Dr. Pasternak's Lewy Body Dementia research at the University of Western Ontario. Best of all? You get a tax receipt that is valid for next year's taxes. Want to learn more about how to donate? Visit The LBD Research Fund & Donations. You can also click the link below to make an online donation:

www.westernconnect.ca/site/SPageNavigator/schulich.html;jsessionid=00000000.app20051a?designee=7682&NONCE_TOKEN=6A19D7EC1D74592D2E71C50BEF086720

That's all from us for June. It was a bit of quiet month for CLBDI but we've got some fun things cooking for later this summer and fall. We can't wait to share them with you. For now, we'll say sit tight and keep checking our Facebook page regularly. That's where any and all information drops first.

Have a wonderful July.

Best,
​Joe

Hello Lewy Warriors!

First and foremost, we hope everyone is having a tremendous start to their summer and you are all enjoying the warm weather. We are a few days late with our monthly update but have plenty to share. Let's get to it and say goodbye to May.

To kick things off, we had a tremendous time on our first CLBDI Community Walk at the end of May. We wanted to thank everyone who came out to join us and everyone we spoke to on the trail/at the cafe for their time and company. It was a lovely May day and we had an excellent afternoon walking the Conestogo River. We wanted to say very special thanks to the folks at EcoCafe (https://ecocafestjacobs.com/) for giving us a space to sit after the walk and for their generous offer of complimentary drinks. We urge everyone to check them out the next time you are in St. Jacobs. The coffee, staff, and atmosphere were all great.

We will be hosting other community events throughout the summer and into the fall so keep checking our social media and, if any of them interest you, come on out and join the fun.

Coming up in June, we have our next CLBDI Talks interview on our YouTube channel, a planned live CLBDI Q&A on Facebook, and the annual donation to Lewy Body Dementia research from the Robert Edward Schmidt Trust. In July, we're hoping to host another CLBDI Community Event in Waterloo (possibly a picnic in the park or outdoor event) and will be sharing our new mid-year donation total! We will also be making some upgrades to the site over the next few months to make things easier and more intuitive for visitors and will continue to post LBD resources, links, and content on our Facebook (https://www.facebook.com/CanadianLBDInfo/) and Instagram (https://www.instagram.com/canadianlbdinfo/). We will be posting on our socials before any website work is underway and, during those times, the site may be unavailable to visitors. Make sure you give us a follow so you can keep up to date on any downtime we may have.

We still have the CLBDI Advocacy Letter 2024 available for free on our website and there is still plenty of time to donate to LBD research here in Ontario. Want to help us surpass our summer donation goal? Check out The LBD Research Fund & Donations page for more information on how to donate.

We'll see you in a month! Have a fantastic June!

Best,
​Joe

Good Afternoon Lewy Warriors!

Another month has flown by and it’s time for another monthly update. We hope that you’ve all had a fantastic April and are ready for the warmer weather. I know we are. We’ve got a few small things to share but so let’s get into it.

Firstly, we’ve been sending out our LBD advocacy letter to MPs and MPPs in the region and are having great results. We can’t wait to follow up with more information about how our conversations evolve over the next few months. We appreciate everyone who has responded and the interest in what we’re doing at CLBDI. We’ve made our letter template available for everyone on our website so you can get a copy of the LBD advocacy letter template and start your own conversations about LBD in your own community by clicking here - CLBDI Advocacy Letter 2024. 

We also have our first CLBDI Community Walk event coming up at the end of May. The event will be free for all to attend and we cannot wait to get out, get active, and hopefully meet some new members of the community. We plan to have a few more free events throughout the summer and are excited to get back out in the Waterloo Region and beyond. We’ll be officially announcing the first event before the end of this week so be sure to check our Facebook page.

Our next CLBDI Talks interview will be coming before the end of the month, as well. We had hoped to have it for you earlier in the month but due to scheduling and availability issues, we've had to push it. Until then, you can watch all our previous videos on the LBD Resources page of our website or by visiting our YouTube channel (www.youtube.com/@canadianlbdinfo). We’re also working out the details for our visit to Dr. Pasternak’s research lab and the campus at UWO. We hope to be able to use that visit to share some informative video content and the chance to see where your donations are going. More information on that will be coming soon.

Last but not least, our donation from the Robert Edward Schmidt Trust Fund will be sent out in June before our mid-year donation total update. There is still plenty of time for you to donate and help us smash our summer donation goal. You can donate online, by phone, by mail, or set up a legacy/memorial donation. Visit The LBD Research Fund & Donations page to learn more and to make a donation. Unable to donate? There are many ways you can help. Share our site on social media, talk to your family and friends, like and subscribe to our YouTube channel, or reach out to us via email and start a conversation. Everything helps us get our message out there into the world.

That’s all from us for April. Wishing you all the best in May.

Regards.
​Joe

Hello Lewy Warriors!

Another month down, another monthly blog post. We hope that everyone had a wonderful February. Ours was a little quiet but that's only because we're gearing up for an exciting spring. Over this past month, we've been working diligently with our Advisory Board to create a dementia advocacy letter that everyone can use to call their local MPs and MPPs to action. The current state of dementia care and resources available in Ontario and across our country aren't enough. With the forecasted dementia trends in Canada, which you can read about in the two Landmark Studies by The Alzheimer Society of Canada shared on our LBD Resources page, it seems that it is only going to become more pressing, more challenging, and more stressful for families, patients, and carers. We wanted to create something that you can use to advocate for those who need it. The letter template should be available on our website for free in the next few weeks.

We also are preparing for our next speaking event! We'll be speaking at the Canadian Clay & Glass Gallery in Uptown Waterloo on March 14th at 2 PM. We'll be speaking about Lewy Body Dementia, sharing the CLBDI story, and answering questions. This event is for people aged 55+ and is free! You can get your tickets via this link:

www.eventbrite.ca/e/lewy-body-dementia-information-session-gather-at-the-gallery-ages-55-tickets-820142136207?aff=oddtdtcreator

We are also beginning to plan out the first CLBDI Community Walk of 2024. Keep an eye out, as the walk should be announced later this month. As with our previous walks, they are free to join and everyone is welcome. These events are a chance for Lewy Warriors and loved ones to meet, get some exercise, and connect. We're also planning to spread to other communities and regions this year and hope to meet some new people and grow our community across Ontario. 

Later in the spring, we are planning a visit to the University of Western Ontario and the research labs where the LBD research we help fund happens. We're looking forward to it and will be reporting back to the community. We might even use that chance to make some video content to share with everyone! Speaking of videos, we will also be putting out the third episode of the "CLBDI Talks Interview Series" on our YouTube channel in the coming weeks. Due to some scheduling issues, we were unable to record and release it as planned in February, but we're working on  it. We've also got some great interview guests planned for the rest of 2024 and plan to branch out and explore more types of video content for everyone to enjoy. Check out the first two episodes on the CLBDI YouTube channel (www.youtube.com/@canadianlbdinfo) and be sure to like and subscribe to be notified whenever we release something new.

In February, we added more to our LBD Resources page including Race Against Dementia, ​The Schlegel-UW Research Institute For Aging, Dementia Dialogue (Podcast), and more. Be sure to check back regularly as we are constantly adding to our collection of resources and links.

That's all from us for now! We'll see you in March.

Best,
Joe