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

Hello Lewy Warriors!

Welcome to a new year! We hope that everyone had a wonderful New Year's Eve and remainder of your holiday season. We're moving into 2024 with lots of plans and are so excited to get back out in our community. Before we get in to that, though, we wanted to share some great news. We've heard from our liaison at UWO and are pleased to share that we are now at $67,167 in total donations! Wow! We thank everyone who donated over the holidays. As always, we could not do this without your help.

This past Sunday, Jan. 28th, we celebrated the inaugural World Lewy Body Dementia Day. Spearheaded by Lewy Body International, it is a day for raising awareness about the disease and advocating for Lewy Body Dementia patients, carers, and medical professionals. LBD is growing worldwide and statistics show that the numbers are likely to continue to rise. This requires education, advocacy, and fundraising to generate and allocate resources for and spread awareness about this disease. World Lewy Body Dementia Day is meant to do just that.

As Timothy Hudson of Lewy.ca states, “There is a clear and present danger to individuals, families and the community, as well as an immeasurable burden put on public health staff and resources as a result of this condition. World Lewy Body Day is a significant step forward to show the need to apply resources to this pressing issue and will make a profound difference to society.”

Want to learn more? Click here: https://lewybodyint.org/

We also had our first community presentation of 2024 this past month at the Terrace On The Square retirement home. We had a lovely time meeting and speaking with the staff and residents about Lewy Body Dementia. We wanted to thank them for having us out and we're so excited to do more all over the region in the coming months. In fact, our next presentation is this Sunday at Christ Lutheran Church in Waterloo. In March, we're hosting our own private event and speaking at the Clay & Glass Museum in Waterloo. Speaking of community events, we have also started planning our "CLBDI Community Walks" and are hoping to be walking all across Ontario this year. Do you want to have us out to speak about LBD in your workplace? Send us an email. We're open for booking for the rest of the year and would love to come out.

In case you missed it, we also released the second episode of the "CLBDI Talks" interview series in December. This episode features Natalia Busch RN and covers long-term care, Sunnyside Home, and the Butterfly Approach to caretaking. If you haven't already, you can watch it below. Be sure to like and subscribe to us on YouTube to get notified when we drop our next episode in February.

On the topic of advocacy, we plan on releasing our advocacy letter templates, which will be available to everyone for free on our website, in the coming weeks. We're working with our advisory board to deliver the best possible templates that cover a wide range of topics including medical research advocacy, caretaker and patient advocacy, and the effect LBD and other dementias will soon have on society as a whole. We'll also be mailing some out to our local MPs and MPPs to start the conversation about the future of LBD and dementia in Ontario. More information will be available soon but we're excited to offer you a springboard for your own LBD advocacy, wherever you're located in Canada.

As usual, we have added more resources and links to our "LBD Resources" page and continue to grow our connections within the LBD community. Be sure to go and check it out when you have a moment. Want to stay more connected to our daily updates? Follow us on Facebook (www.facebook.com/CanadianLBDInfo/)! We've got lots planned for the new year and can't wait to share more with you in the coming months. Wishing you all the best in February.

Best,
Joe

Good Afternoon, Lewy Warriors!

It’s time to take a look back at all the things that we did together this past year and begin to look towards 2024. Before that, we wanted to say that we hope everyone had a Merry Christmas and a wonderful holiday season filled with warmth, love, relaxation, and fun. We sure did.

We’ll start things off with a little update on our donation total! We’re so excited to share that we've reached $66,417 in total donations! Amazing! Although we had somewhat of a quieter fundraising year at CLBDI, the donations have continued to come in organically and our reach has grown naturally. We’re so thrilled to see it and are so thankful for the generosity and support from our community. Considering that we started the year under $40,000… we’re filled with gratitude and joy. Thank you, again.

So, what did we get up to in 2023? Well, as previously mentioned, it was a much quieter year than 2022 for many reasons and we had to pivot our plans quite a few times. Luckily, we've gotten pretty good at it. Looking back, though, we did manage to get quite a lot done considering how crazy the year was for all of us.

We launched the CLBDI YouTube channel (www.youtube.com/@canadianlbdinfo​) in February along with our first webinar. In March, we spoke at Mt. Zion Church in Waterloo as part of their “Beneath The Surface In Waterloo” speaker series. In April, we announced “The P.E.I. Project”, which was to be a walk across P.E.I. by our founder following the Island Walk path to raise money for LBD research. Unfortunately, she injured herself early and we ultimately chose to end the walk for her own health and safety. She was grateful to be able to spend some time on the island and recover, though, and during her stay she met so many wonderful people. On top of that, the support and love we felt before, during, and after the event was just amazing. During this time, we also saw an unprecedented jump in donations and were able to reach some of our major donation milestones very quickly.

During the summer, we took some downtime to recover and reorganize ourselves after some major life changes and unexpected medical emergencies. During that time, we continued to post, share stories and connect with community members, and grow the CLBDI platform online. We started our instagram account (@canadianlbdinfo) and continued to connect with other LBD platforms. During our downtime, we began to think hard about LBD advocacy and what that means for us. This lead to some plans that we have cooking for 2024 and beyond including advocacy letters and more.

In September, we had our first "CLBDI Community Walk" in St. Jacobs. It was a wonderful time and we cannot wait to announce more in the spring of 2024. Thank you to everyone who joined us. In October, we said farewell to Advisory Board member Keith Myra and hello to new members Marisha, Michelle, and Morgan. We wanted to thank Keith again for everything he’s done and say that we’re so pleased with our new cohorts and what they bring to the table. You can expect to see and hear more from them in 2024. And lastly, in November and December, we released the first two episodes of the “CLBDI Talks” interview series featuring Dr. Stephen Pasternak and Natalia Busch RN. We are so grateful to them for taking time to speak with us and we hope that you enjoyed our conversations.

It has been a strange and wonderful year but we’re so humbled by the constant support we've received. We're also very proud of everything we’ve accomplished so far with CLBDI. Throughout the year, we’ve been consistently updating the LBD Resources page of our site, connecting with more LBD communities, sharing more LBD-related content, and meeting more of your wonderful Lewy Warriors. It's been amazing. We have a whole bunch more community events planned for the new year and will be announcing some of them very shortly. You can always follow us on Facebook to stay up to date with our daily announcements. If you're interested in a more detailed breakdown of the year, you can always read the collection of monthly blog posts from the previous years in our CLBDI Blog archive.

I think that is all for 2023. We want to wish you all the best in 2024 and a Happy New Year’s Eve. See you next year!

Best,
Joe & The CLBDI Team