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

Hello Lewy Warriors!

Another month has come and gone so it is time for our monthly update! We hope everyone has had a wonderful November and you are all ready for the holidays and the end of the year. It's been quite a year for us and we have big plans for December.

First and foremost, we wanted to remind everyone that we are not doing a Holiday Fundraiser this year. Instead, we encourage you to donate to Dr. Pasternak's LBD research directly by visiting the donation landing page (www.westernconnect.ca/site/SPageNavigator/schulich.html;jsessionid=00000000.app20051a?designee=7682&NONCE_TOKEN=6A19D7EC1D74592D2E71C50BEF086720) or The LBD Research Fund & Donations page of our website. All donations go directly to Dr. Pasternak's research and there are many ways to donate (online, over the phone, by mail). Plus, you get a tax receipt that you can use when tax season rolls around next year!

As you can see from the video posted above, the first of our "CLBDI Talks" interview series is now live on our YouTube channel. We sat down with Dr. Pasternak to talk about LBD research, what got him into neurology, where the donations will be used in the future, and more. Please check it out and be sure to like and subscribe to stay up to date on all the videos we release. The second video, featuring Natalia Busch RN from Sunnyside LTC, will be going live before the end of the year. We'll be talking with her about long-term care, Sunnyside's recent "Butterfly" accreditation, and more.

In December, we'll be heading out and giving a presentation at Terrace On The Square in Waterloo on Monday, Dec. 11th. We're looking forward to getting out in the community more in the coming months and we're beginning to book presentations for 2024. If you or someone you know is interested in having us come and talk about CLBDI and Lewy Body Dementia, send us an email or message! We'd love to come out and speak!

We are also still planning to launch a line of hats for this winter but are running a bit behind due to supplier issues. Fear not, though, as we will have some updates on that as soon as we can. We still have some CLBDI T-shirts available, so send us a message if you are interested in purchasing one of them. Half of all money raised through shirt and merchandise sales goes directly to Dr. Pasternak's research at UWO.

Lastly, we've added some more resources to the LBD Resources page of our website that includes a link to the Ontario Caregivers Organization which features tons of great information and resources for carers in Ontario. We also wanted to mention, since tax season is coming up, that you should check out the Canada Caregiver Credit (CCC) if you are caring for a Loved One. Many people are unaware of this benefit and it could be very helpful for carers who have had to sacrifice working to care for someone they love.

​That's all from us for November! See you at the end of the year!

Best,
Joe

Hello Lewy Warriors!

Another month down and we have some exciting news to share with you all! It's been a busy October for us here at CLBDI so let's get right to it!

First and foremost, we'd like to welcome three new members to the Advisory Board. We're excited to have Marisha, Michelle, and Morgan join us and cannot wait to formally introduce them in the coming weeks. They've already joined us in our first official meeting back after our summer hiatus and are bringing fresh energy, great suggestions, and their unique skills. We'll be updating the roster on our website very soon and you'll be able to learn more about them and what they bring to the table. For now, we'll say welcome and we're so grateful to have you. In related news, our member and friend Keith Myra has had to step away from the Advisory Board but will continue to be a supporter and consultant for us. He has been an amazing support and has helped us in so many ways. We wanted to thank him and wish him all the best in the future. Thank you, Keith, for all you've done.

Coming in the next few weeks, we have our second "CLBDI Community Walk" rescheduled for Nov. 5th in St. Jacobs. Everyone is welcome, from carers to medical professionals to community members, and we hope to see you out. We'll be meeting at the trailhead by the lot at 20 Albert St. E. in St. Jacobs at 1 PM (which is free) and walking along the river. Following the walk, we'll be heading to the EcoCafé again for a warm drink and snacks. Want to learn more? Check out our Facebook page (www.facebook.com/CanadianLBDInfo/) for more information and updates on the event. We also have the first and second videos of our "CLBDI Talks" interview series releasing next month. Originally, we had planned to drop the first episode with Dr. Stephen Pasternak this week but, due to some technical difficulties, that release has been slightly delayed. Nonetheless, we cannot wait for you to see them so keep an eye peeled for more announcements and the first episode to drop very soon. Be sure to follow us on YouTube to get notified as soon as it becomes available.

In other news, after a wonderful lunch with Ashley Irvine, our liaison at UWO, we're so happy to announce that we've officially passed $65,000 in total donations! AMAZING! Thank you to everyone who has been involved in any way, whether through donations or sharing our posts or attending our events. Thank you to Ashley, as well, for all her work and the wonderful lunch. We're so grateful to have made it to this milestone and cannot wait to see how far we go in 2024. 

As we've previously mentioned, the rest of this year is all about advocacy and community, so we will be drafting letters to our local MPs and MPPs in the near future. We would love for you to be involved and to have your voice heard. If you have any suggestions or ideas you'd like to see us cover, don't hesitate to reach out to us via our contact box, email, or direct message on Facebook. We would appreciate hearing from you. Also coming in November, we have our next CLBDI merchandise drop, an LBD presentation at Terrace on the Square in Waterloo on the 13th, and more. Follow us on Facebook to stay up to date on all of these events and more.

We hope everyone is having a fantastic weekend and you've all had an amazing October. See you in a month!

Best,
Joe

Good Afternoon Lewy Warriors!

September has flown by and we have plenty of things to share! First and foremost, our inaugural "CLBDI Community Walk" is coming up this Sunday in St. Jacobs! We will be meeting at the parking lot at 20 Albert St. E. at 1 PM and going for a leisurely walk along the Conestogo River followed by an optional warm drink and further conversation at the EcoCafé! Parking, conversation, and the walk are free to join and open to anyone who wants to be a part of it. Food and drink is optional and to be covered by participants. We're really excited about getting out into the community this fall and connecting with other Lewy Warriors! Hopefully, we can share stories, enjoy some light exercise, and learn more about LBD in our own community and how to better advocate for you. Our founder Carol has been recovering all summer and is now finally at a place where we can give the green light for these kinds of events, so we are super excited to get out there and meet everyone!

Secondly, we will be uploading the first video of our "CLBDI Interview Series" to YouTube in the next few weeks! In it, we sit down with Advisory Board member and Neurologist Dr. Pasternak to discuss what he is currently working on, where our donations are going and how they help, and the current state of Lewy Body Dementia research. It's going to be excellent. Be sure to follow us on Facebook to stay up to date on when the video will be dropping and see it first.

Speaking of our Advisory Board, you might notice some updates to the website and roster over the next few weeks as we add some new members to the board and make some changes behind the scenes. We'll have more to share at the end of October, but we're excited to shake things up and add something new to the mix.

Lastly, although we are not hosting a Holiday Fundraiser this year, we are excited to share that we will be launching our second run of CLBDI merchandise. This time, we're opting for some warm hats for the upcoming fall and winter season. The run will be limited, so be sure to put your order in as soon as you can. We'll let you all know as soon as they arrive and are available for purchase. We also have a limited amount of CLBDI shirts left from the first run of merch and will be offering a few specially priced bundles if you want to own both a shirt and a hat. More information is coming very soon.

That's all we have for today! We hope everyone has had a fantastic September. See you again in a month.

Cheers,
Joe

Hello Lewy Warriors!

The summer has flown by and it's time for another monthly update from the CLBDI team! We hope that everyone has had a fantastic August and that you have a wonderful long weekend ahead of you. We have some awesome things to update you on, so let's get right to it!

First of all, we had some issues with finalizing some of the donations and transferring the money from Bob's Trust Fund to Dr. Pasternak's team in June/July but we're happy to say that thanks to Ashely, our liaison at UWO, and Andrew, who works with our founder on the Trust, everything has been sorted out. Pair the money from the Trust with some other donations from wonderful members of our community and we've reached $64,427 in total donations. I know that I sound like a broken record most of the time but... WOW! THANK YOU!

We're seeing organic growth and building surprising new connections all the time. It's so humbling but also gratifying for us. We appreciate everyone who has donated, shared our page, or connected with us on social media. As we have previously mentioned, we're ahead of our initial timeline for donations. This has lead us to having some internal conversations and to us feeling comfortable enough to branch out and shift our focus towards advocacy and community outreach for the rest of the year.

So, we will not be having any sort of Holiday Season fundraiser this year. Instead, we are going to do a limited run of some really cool CLBDI merch and focus on connecting with other advocates, community members, medical professionals, politicians, and anyone else who will listen to us. We will also be working on getting out into the community and interacting with other Lewy Warriors in the Waterloo Region. To start things off, we are launching our "CLBDI Community Walks" series in late September or early October. These short, informal walks will be free to attend and be a great place for networking, sharing stories, and finding support. We'll have more information on them soon, but we hope that you'll consider coming out and getting active with the CLBDI team.

So, this is where you might come in. We're looking for more opportunities to connect with people in the community. Whether you are interested in having us come and speak, want to help our cause or have some suggestions, are interested in collaborating, or you are an advocate yourself... send us an email! We would LOVE to hear from you.

We also know that we have not yet uploaded our new video content and some of you have asked about it. As you may know, there were some unexpected delays on both sides. With that being said, we're working on finishing our first video up in the next month or so. We're hoping that there will be some new YouTube content for everyone in the fall season. Thank you for understanding.

That's all from us for this month! We will be taking a few days off for the long weekend so if you reach out to us directly, we may not get back to you until next week. Otherwise, we'll see you here again at the end of September.

Wishing you all the best,
Joe

Hello Lewy Warriors,

It is time for another monthly blog update which means that it is already the end of July! Where does the time go?! Firstly, we hope that everyone has been having a wonderful and fun summer. The sun is out and the beautiful weather is here. We have been taking it a bit easy ourselves (and we will tell you why) so this blog post should be relatively short.

Since the start of this month, we have been slowing the pace here at CLBDI due to some unexpected medical issues and injuries to myself and members of our team. To make sure that we have enough time for full recovery and follow up, we are also not going to be very active through the month of August. We are taking the necessary time and precautions to make sure that we get ourselves back to 100%. We are looking forward to the fall and are already slowly beginning to plan our next moves but, for now, taking care of ourselves is top priority. Rest assured, everyone here will be back to good health very soon.

One thing we do have to celebrate, though, is reaching a new milestone in donations! Thanks to you, our amazing community, we have raised a total of $60,057.00 with another $1,500.00 or so more that is being processed as we speak. We are so grateful to everyone who has donated or involve them selves in anyway with what we do here at CLBDI. In fact, $60,000.00 was actually our goal for the start of next summer, so we are absolutely over the moon with excitement and thrilled to be ahead of schedule. Thank you, everyone.

We will continue to post regularly and monitor our direct messages, email inbox, and contact box throughout August but there will be no events, projects, major updates, or fundraisers until the fall. We hope that everybody has a relaxing end to their summer and we will see you in a month.

All the best,
Joe