Hello Lewy Warriors!

As promised in our last post, we have tons of stuff to share with you in this month's update! So let's get right to it...

First and foremost, we wanted to take a moment to remember and honour the life of Robert "Bob" Schmidt who passed away on February 8th, 2020. Bob's Lewy Body Dementia diagnosis and LBD journey helped catalyze the creation of CLBDI. He was a beloved husband, father, grandfather, and so much more. Everything we do, we do for him and others like him.

You can visit Bob's 2021 memorial here. 

You can read the article about Bob, "Remembering Bob Schmidt, Lewy Warrior", from Valerie Hill at The Waterloo Record here:

https://www.therecord.com/.../remembering-bob-schmidt-a...

In loving memory of Robert "Bob" Schmidt.
June 28, 1944 - February 8, 2020

​Secondly, in case you missed it, the good folks over at UWO have created a secondary donation page for donations made in memory of a Loved One. We've seen an increase in people wanting to create fundraiser in memory of a Loved One and people asking how to properly include options for donations in the obituary and/or at the funeral. This new site streamlines the whole process and makes it much easier for everyone. If you wish to set up a fundraiser in the name of a loved one who has recently passed but don't know where to start, please don't hesitate to reach out to us via email or messenger.

We have updated the CLBDI website to feature both the new personal donation landing page and the new memorial donation page.

In other news, we FINALLY have an in-person Lewy Body Dementia presentation coming up next month! This marks our first official LBD presentation since 2019 and (hopefully) the first of many this year. Carol, our founder, is going to be speaking at Mt. Zion church in Waterloo on Wednesday, March 22nd as part of their "Beneath The Surface In Waterloo" series. If you're a member of the church, want to book a presentation, or are interested in more information, please send us an email. We're super excited to get out in the community, educate, advocate, and meet some new people.

Another amazing announcement we have for you is that we have raised more than our goal of $40,000.00 in total donations and our new donation total, as of earlier this month, is around $41,550.00. We also know that we have since surpassed that number and are on our way to our next goal of $45,000.00! We expect to reach it before the end of the year. Thank you again to everyone who has donated or been a part of this journey. We couldn't do it without you!

​Lastly, our YouTube account is going to be going live in two days! We'll be sharing the link and information on our Facebook page and website on Tuesday, February 28th. The first video will be a digital version of our LBD presentation and we have plans to publish interviews, behind-the-scenes videos, vlogs, and more LBD-related content. Please consider giving us a like and follow and share our first video!

We hope you've had a wonderful month and managed to stay out of all the bad weather we've had. We've got lots more coming in March!

See you in a month,
​Joe

Hello Lewy Warriors!

We're here with another monthly update! We hope your 2023 has started off on the right foot and that all is well for each and every one of you. Although we don't have too much to share this month, we've been busy working away on new LBD content and planning some amazing fundraising events for the summer. We're also working on booking some more live events and presentations for the spring, so you might see us out in the community sooner rather than later. There will be a lot more information about these events coming in next month's blog post.

We can share that our YouTube channel will be going live in a few weeks with the launch of our first digital Lewy Body Dementia presentation. We have plans to create more video content including interviews, vlogs, educational videos, and more in the coming year. We've also added some of our CLBDI literature (in downloadable PDF format) to our website for free. Last month also saw the launch of our first run of CLBDI cards and we're happy to say that inventory is running out. Half of all sales will be donated in March. If you'd like to learn more about the cards and place an order, or take a look at our CLBDI merchandise before they're out of stock, be sure to visit our Community page. If you're looking for more LBD-related content, we are always updating our LBD Resources page and are constantly sharing great resources, posts, and information over on our Facebook page.

Lastly, we have our fingers crossed and are waiting for confirmation that we have surpassed $40,000.00 in total donations. When it is confirmed, it will be shared on our Facebook page and included in the following month's blog post. Even if we are still slightly under the $40k mark, we wanted to thank every single person who donated their time, energy, or money to our cause. It's still so amazing to us that we've been able to do so much in the past few years with the help of our great community. We're grateful for everyone who has crossed paths with us in any way.

Alright. I think that's it for this month. Be sure to check out our YouTube channel when it launches and have a great February everyone!

Best,
​Joe

Hello Lewy Warriors!

This is our last blog post for 2022 and we thought that we would recap our amazing year and show our gratitude to everyone involved in CLBDI (including our amazing community). If you want an in-depth look at everything we've done this year, I recommend browsing the archived blog posts of 2022, which can be found at the bottom of the CLBDI Blog page.

First and foremost, we hope that you had a Merry Christmas and Happy Holidays! We hope it was spent having fun with your friends and family. Even though we had some rough weather in the region, we still managed to find some joy and comfort this holiday season and we hope that you did too.

I guess we should start off with our new donation total! At the start of the month, Ashley, our liaison at UWO let us know that we were sitting at $38,261.00 in total donations! WOW. We're so excited to see that we've passed our goal of $35,000.00 and are nearing our next milestone! We've also been informed that there have been some donations later in the month that put us over $38,500.00. That means that this year we raised around $10,000.00 this year! Amazing! We don't know the exact number right now but we're confident that we will surpass $40,000.00 early in the new year. As always, we can't thank you enough for your support and your donations. To all the folks who have been a part of this journey, whether you attended a show (digitally or in person), are a member of our advisory team, donated your money or time, visited our site, or shared our information with someone in need... THANK YOU. We couldn't do it without you. Together, we are actually making change and helping to further understand, manage, and combat Lewy Body Dementia in our own community. We'd also like to say thank you to our UWO liaisons Emily and Ashley for all they've done this year (including the amazing new landing page for LBD donations) and for that lovely lunch we shared in May. It was so nice to finally meet you both.

So, what did we do this year? Well, we donated the funds from our 2021 Holiday Fundraiser at the end of December 2021 and since then we have sold many CLBDI shirts. We've been donating 50% of all sales in small lump sums to Dr. Pasternak's LBD fund since the start of the year. Our annual donation from Bob's LBD Trust Fund was also made in June. In the summer, we launched our fabulous second online art show. It featured 8 amazing artists from all across Canada, The United States, and the UK. We wanted to take a moment to thank them all again for donating their artwork, time, and creative energy to our little project. We're constantly floored by the kindness and willingness of our friends and peers to join us on our mission to educate, fundraise, and advocate. That amazing online show lead to our first ever in-person art showing at Three Sisters Cultural Centre in October. It was so much fun and we're already planning on doing more live events in 2023. We wanted to thank everyone at Three Sisters for being such amazing hosts, helping us with the show, and having such a wonderful and inviting space.

In February, we connected with Valeria Hill at the The Record to remember and honour Bob with "Remembering Bob Schmidt, a Lewy Warrior". The article was so wonderfully written and we appreciate every word. Throughout the year, we worked with Ashley and Emily to have the aforementioned landing page set up to make donating easier and finally got to meet them both in person. They've been instrumental to all we've been able to do and in connecting us to UWO. We also connected further with other LBD websites and communities like Forward With Dementia and The Purple Sherpa over the year and look forward to building those relationships more in 2023. We held many meetings with our Advisory Board, all of whom have given their time and advice to help us stay on track and grow. We wanted to say thank you to each and every one of them. We appreciate all that they do.

Over the last few months, we've been working on plenty of great CLBDI content behind the scenes. We've also made some big plans for the new year that we can't wait to share. One of the first things that we've done is launch the first set of the CLBDI holiday/birthday cards! They come in four unique designs and can be purchased in packs of four or individually. More information and an order form can be found on our Community page.

In conclusion, it has been a wonderful year and we cannot say thank you enough to everyone who has been involved. I'm sure that I've mentioned before that Carol, our founder, likes to say we're small but mighty. "We're just small potatoes," she often says, "but we should be proud of what we've done." I am. Very much so. I don't want to ramble here so I will keep it short. We appreciate all of your support and are grateful to have made an impact, whether it is by funding Dr. Pasternak's LBD research at UWO, connecting with fellow Lewy Warriors and their families, or simply giving people who are in search of information a place they can use on their LBD journey. We will have plenty more things to share in the early months of next year. For now, all we want to say is this: 

Happy New Year. Thank you all for an amazing 2022. We wish you all the best in 2023.

Cheers,
​Joe and the CLBDI team.

Hello Lewy Warriors!

November is at an end and we are moving into the final month of 2022. Unfortunately, we don't have much to share in this month's update because we have been dealing with illness and various other unforseen delays over the past few weeks. With that being said, we do have a few things to share with you about the coming months and we are back to going full steam ahead as the year comes to an end.

As previously stated, we are choosing to forgo a Holiday Fundraiser this year. Instead, we are hoping that everyone will donate on their own time using the new direct donation landing page that was provided to us by Ashley and Emily at UWO. We will also be printing a limited run of CLBDI Holiday Cards that you will be able to purchase online (more on that next week). We still have some CLBDI shirts available in limited sizes too. They're a great holiday gift and are limited edition! We may never print more of this design so this is a chance to own a piece of CLBDI history and do some good! Half of all the money that we raise through card and shirt sales will be donated to LBD research at the end of the year.

In the coming weeks, you will see that we will be adding a section for CLBDI literature to our website and will offer a selection of our printed resources in PDF format. This is for everyone outside of our region who might be interested in what we do and for those of you who want to help spread the message. We will also be sharing the new donation total at the end of this month or in early January. We're excited to see what we've been able to raise since the summer and are crossing our fingers that we've surpassed another one of our donations milestones.

As mentioned in our previous blog post, we had planned to expand CLBDI to other platforms by the end of this month and have our presentation available on Youtube but, due to illness, we've been delayed. We've decided to take a bit more time to get it right, make sure everyone is back to full health, and make sure we're putting out the best possible content. So, with all that being said, we are now planning to branch out to other social media platforms in January and can't wait to share some original CLBDI content with everyone.

We've been dealing with many setbacks this month and things have been fairly quiet but we promise that we have big plans for next year and plenty of things coming your way in December.

We hope that everyone out there is happy, healthy, and staying positive. Thank you all for the support in 2022 and we'll see you again at the end of the year!

Good afternoon Lewy Warriors!

October is coming to a close and we're feeling grateful, excited, and a little tired. It's been quite the busy month for us but we pushed through and are so happy to announce that we've raised $1,560.00 for LBD research through our online and in-person art show. That does not include some of the direct donations made in lieu of purchasing art so we're pretty sure that we've crossed the $35,000.00 mark in total donations. Unfortunately, we won't know exactly how much we've raised until the end of the year but we're hopeful, grateful, and proud of everything we've been able to do in 2022. Carol likes to say we're "small potatoes" and, while that may be true, I like to think of CLBDI as mighty too. I wanted to send out a sincere thank you to everyone who has donated, purchased artwork, visited our site, joined our online community, and shared in our common goal. We've got big plans for 2023 and hope you will be there to join us on our journey.

As for the show itself... All I can say is wow! What a wonderful experience! We had so much fun at Three Sister's and met so many great new people. We even got to meet some Lewy Warriors who didn't know about CLBDI and got to share our experiences and stories. Thank you to the staff and everyone else who was involved. We were so lucky to be there on a beautiful and warm day where the sun was shining and the mood was high. Thank you to Dr. Pasternak for taking time out of his busy schedule to stop by and speak. Also, we want to send a huge thank you to all our friends and family who made the trek out to St. Jacobs. for the show We're definitely happy that some of the artwork sold but we're also happy that our goal of getting CLBDI out to the public again after so much time spent as a digital-only endeavour was met so warmly. It was a truly wonderful day and we hope to do more events like this one in the future. If you're ever in St. Jacob's and are looking to visit a real gem, stop by Three Sister's Cultural Centre. They have so much local artwork and the atmosphere is so welcoming. You can learn more about the gallery and browse the events they have coming up on their website.

We also wanted to say thank you again to all the artists who donated their time, energy, creativity, and artwork to this year's show. Seeing the generosity of each and every one of you has been so moving and we appreciate you so, so much. You've allowed this year's show to be bigger, better, and more diverse.

What's next? Well, we have some photos to share and some CLBDI original content coming your way a little later on in November before we move into the holiday season. Unlike previous years, we are not doing an online Holiday Fundraiser. Instead, we urge you to donate directly using the new direct donation landing page, which is now live and operational, to spread some cheer and do some good this Holiday season. The new direct donation page, which was spearheaded by Emily and Ashley, has made it so much easier to donate to Dr. Pasternak's Lewy Body Dementia research. We're so thankful to both Emily and Ashley for taking our, and by proxy your own, suggestions on how to improve the process and implementing it in such an awesome and practical way.

That's all for this month. Have a safe and fun Halloween everyone.

Best,
Joe

Good Afternoon Lewy Warriors!

Can you believe that the month is already over?! We're back with another monthly update and we have some great news! But first, we want to thank everyone for their patience as we dealt with some delays and interruptions over the past two months. We hope you have all had a great September and enjoyed the end of the summer. It's been a little stop and go for us but we're ready to travel full stream ahead into the holiday season.

As previously stated, we've extended CLBDI's second digital art show to Thanksgiving weekend. Today, we're excited to announce that we're doing a one day in-person CLBDI event and art show at Three Sisters Cultural Centre in St. Jacob's, Ontario on the 22nd of October. This event will happen after the digital portion of the event is over and will feature presentations from our founder Carol and advisory board member and neurologist Dr. Pasternak, a look at our upcoming digital LBD presentation, new art pieces, drinks, snacks, and free CLBDI literature. It runs from 12 PM until 9 PM with drinks available and presentations happening after 5 PM. All art pieces that don't sell online will be available to purchase and, if your wall is full, we will also have a booth set up for donating to Dr. Pasternak's LBD research directly and a limited number of shirts available. Our show is also the same day as the Kissing Bridge Trail Studio Tour in St. Jacob's so there will be plenty of culture to take in and studios to visit. Best of all? It's free!

We're working on (finally) getting original CLBDI content on to Youtube and our first LBD presentation will be available shortly after the art show. More information to come. We've also added a bunch of new links and resources to our LBD Resources page with more to be added in the coming months. If you have any suggestions or links that we should check out, please contact us through our website, email, or even a DM on Facebook. We're always looking to add more to our archive.

We're also saying goodbye and sending best wishes to our UWO liaison, Emily Grass, as she moves to another position and welcoming Ashely Irvine back to the fold as our new liaison. Emily has been fantastic and we appreciate everything she has done for us. You can find all of Ashley's contact information on our LBD Research Fund page. One of the amazing things that Emily implemented before her departure is a new online landing page specifically for LBD donations that will be added online very soon. We're looking forward to seeing it go live and hope that it streamlines the donation process for everyone.

We'll be back in a month with our usual monthly update plus a recap of the art show, new CLBDI content, and some ideas about what we're doing this holiday season. Have a wonderful October!

Best,
​Joe

Hello Lewy Warriors!

We apologize for the lateness of this monthly update. As some of you may remember, we took a week off in the latter half of August and during that time I (the IT and social media manager) traveled to Portugal. It was an amazing trip but I unfortunately ran into some issues and was stuck in Portugal for longer than expected. As we mentioned on our Facebook Page last week, this meant that we were unable to fully open things back up at CLBDI until I returned. I'm home now and we're catching up on everything we missed. We have a few things to cover today so let's get to it!

Firstly, due to the extended absence and so that we can maximize the reach of our show, we've decided to extend the second CLBDI digital art show until Thanksgiving! Now you all have more time to go and check out the amazing artwork donated by the many talented artists! Visit the CLBDI Online Gallery today and be sure to share the link to the show with friends and family.

In related news, we are also toying with the idea of having a small, local, in-person viewing event at the end of the digital portion of the show. If this idea comes to fruition, we hope to invite everyone in the Waterloo Region to come and check out these amazing works of art in person. More information on that soon.

Secondly, we unfortunately ran into some issues with our email account and have not had access to it since the 20th of August. We were unable to fix it until I had returned from Portugal but we managed to reach the people that we needed to speak with to get it fixed and the issue has since been resolved. We've been told that the email account should be up and running tomorrow evening. With that being said, if you have reached out to us during these past three weeks, we may not have received your email. If you don't hear back from us, please reach out again. We're so sorry for the lack of communication.

​We are still working on branching out to other social media platforms and getting our Youtube page up and running as well. We're obviously running a bit behind and playing catch up at the moment but we still have plans to expand to other platforms and bring you original LBD content. There will defintely be more information on CLBDI's next steps in the September update.

Thank you to everyone who has purchased artwork, donated to UWO, and reached out to us in the past month. We're hearing more and more of your stories and connecting to more and more people who are on their own LBD journey. We are so grateful to be able to help everyone out, whether they just need someone to talk to, are looking for information about LBD, or are looking for resources in our community. We also have heard that some younger Lewy Warriors have been raising money and donating to UWO on our behalf and have joined London, who donated a piece to the art show, in raising funds and awareness about LBD. We wanted to thank them for their compassion and generosity. Together we really can make a difference.

Ok, that is all for this month. We hope everyone has had a wonderful end to their summer and you are all looking forward to the coming holiday season(s). We sure are.

All the best,
Joe and the CLBDI Team

Hello Lewy Warriors!

What a month! We're already halfway through the summer and we've got tons of information to share with you. First and foremost, we've launched our second online art show over on the CLBDI Online Gallery! This year's show features a collection of amazing artists who have graciously donated their artwork (time, energy, hard work, and creativity) to our cause. We simply cannot thank them enough for their kindness and support. The show will run until mid-September and artwork will be sold on a "first come, first serve" basis so be sure to check it out as soon as possible. All funds that we raise through this show will be going to Dr. Pasternak's Lewy Body Dementia research at the University of Western Ontario after the show closes. We have also decided to include the option to purchase a copy of any of the posters for the show on matte poster stock as well, so if you really dig the posters or want a copy of your own... you can do that!

Speaking of fundraising, our wonderful liaison at UWO Emily let us know that we've reached $32,821.17 in total donations as of the end of July! That is just AMAZING! We cannot thank the community enough for helping us surpass our goal of $30,000.00 raised. This is a win for everyone! Thank you, thank you, thank you to everyone who has donated or shared our posts or been involved in any way. We've been speaking with Dr. Pasternak and hope to bring you an inside look at where this fundraising money is going and how it is being used to better understand Lewy Body Dementia in the near future. Keep your eyes peeled!

We've also been meeting with our Advisory Board to brainstorm our plans for the rest of the year and have started to think about the holiday season. We hope to have some announcements coming your way very soon along with some new CLBDI merchandise and maybe even some updates for next year!

We also will be making the CLBDI brochure available to you to download in August and will be doing some regular updates to the rest of the site as the summer comes to a close. Are there any features that you feel that we are missing? Send us an email or get in touch with us via the contact form on our homepage! We would love to hear from you about how we can make this site better.

We should also let you know that we will be out of the office from the 21st to the 29th of next month and will be very slow to respond during that time, so if you're interested in getting in touch with us or purchasing artwork from the show, please consider doing so in the next few weeks.

We hope everyone is having a wonderful summer so far and thank you to everyone who has already visited, purchased artwork, or had kind things to say about the art show. We'll see you in a month!

Best,
Joe

Hello Lewy Warriors!

Welcome to the summer! We hope you have all had a wonderful June and are excited for the Canada Day long weekend coming up. It's been a busy month for us but we are super excited for July and the rest of the summer.

We've been getting ready for our upcoming online art show and fundraiser and that has been the main focus for CLBDI all throughout June. All of the amazing pieces have been photographed, the first two posters have been unveiled, and the new and improved online art gallery is in the process of being built. We can't wait to launch the show and for you to see all the awesome artwork that has been donated this year. This year, our show features artwork from various artists based out of Waterloo, Northern Ontario, B.C., Pennsylvania, the UK, and more. The show will run from July 25th to mid-September and, as with last year, every dollar we raise will be going to Dr. Pasternak's LBD research.

Dr. Pasternak, who also sits on our Advisory Board, is a neurologist working at The Cognitive Neurology and Alzheimer Research Centre (CNARC) and the Robarts Research Institute at the University of Western Ontario.

CNARC is "a specialized clinic for the investigation of neurodegenerative disease and research on the clinical features, causes, diagnosis, and treatments of these diseases." This includes Alzheimer’s disease, Frontotemporal dementia, and related disorders including Progressive Supranuclear Palsy, Lewy Body Dementia, and Parkinson’s disease dementia.

Want to learn more about what they're doing? Check out these links:

https://www.schulich.uwo.ca/.../cognitive.../index.html
https://www.robarts.ca/

Next month, we will be printing more CLBDI literature and sharing it throughout the community. If you live in the Waterloo Region and would like a few copies for yourself or your business, don't hesitate to ask or send us an email! A printable digital copy will be coming to our website in the coming months as well.

We will also be getting a new donation total in July from Emily at UWO so you can expect an update on where we stand in the July Update post.

In case you didn't know, we have a Facebook page that we are very active on. We post regularly (multiple times a week) and share all types of LBD-related content. We're looking to grow our community there so click here if you want to check it out. Be sure to give us a like and follow!

That's all from us this month! Have a wonderful July and Happy (early) Canada Day!

Best,
Joe

Good Afternoon Lewy Warriors!

It's the end of the month which means it's time for another monthly update! May has been another month of working behind the scenes and gearing up for this summer's events. We're inching closer and closer July which means that we are weeks away from the launch of the next art show's promotional material and event rollout. We're shooting all of the paintings and prints over the next week or two at a wonderful studio in Kitchener and then we will begin to share more information including the show's poster, dates, and more. Keep your eyes peeled!

We also finally met with our liaisons from UWO, Emily and Ashley, for a lovely lunch. We discussed our plans for the future, brainstormed some ideas and had a wonderful time. We wanted to thank them both for their support and all that they've done for CLBDI over the past few years. They have been an integral part of CLBDI and it was so nice to finally meet them in person. They let us know that, even though we haven't been running fundraising events through the first two quarters of 2022, we are still receiving donations and reaching new people. Though I do keep track of our website's traffic, it is amazing to hear that people are not only donating but also finding our website and community helpful and inspiring.

You might have noticed that we've added a territorial acknowledgment to our homepage. We chose to do this because CLBDI stands in solidarity with and respects the Indigenous Peoples of our region and across Canada. It is our formal statement recognizing the enduring relationship that exists between Indigenous Peoples and their traditional territories. 

Also, coming throughout this summer and fall will be our expansion onto other social media platforms and more original CLBDI and Lewy Body Dementia-related content. We have plans to launch our YouTube page (finally) and to get on Instagram and Twitter. Be sure to give us a follow when we launch!

In case you missed it, the Intentional Lewy Body Dementia Conference is coming up on June 15th and 16th in Newcastle, England! The ''Living With Lewy" strand of the event (done in collaboration with the Lewy Body Society out of the UK) is free to attend both physically and digitally for any caretaker, medical professional or dementia patient. It features tons of amazing speakers such as Norma Loeb, Susan Williams, Timothy Hudson, and more. If you are interested in attending, click here to browse the programme and fill out a registration form. It should be noted that since this is happening in the UK, the times indicated on the agenda are UK times. That means that for those living in Eastern time zones, the times indicated are actually 5 hours ahead, for Central time 6 hours ahead, for Mountain time 7 hours ahead, and for Pacific time 8 hours ahead. The conference will also be recorded and will likely be available online for those who cannot attend.

That is all for today but we will be posting multiple times in June as we move towards the launch of our second online art show. Check out last month's update for more information on the show including some links to some of our featured artists and visit the Community page on our website to read all about last year's show.

Have a wonderful June!

Cheers,
Joe