9/1/2023 0 Comments
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,
7/31/2023 0 Comments
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,
7/2/2023 0 Comments
Hello Lewy Warriors!
Happy (belated) Canada Day from all of us here at CLBDI. We hope you've been having a wonderful weekend. It's been a whirlwind of a month for us at CLBDI so we have some updates to share. First and foremost, we wanted to address the premature end of "The P.E.I. Project" and say a sincere thank everyone who donated and showed their support before, during, and after the event. As you may or may not know, we had to end the walk early due to Carol suffering an injury on the trail. Safety is our utmost priority so we decided to call it early. We're glad we did and, although we hoped we could make it the whole month, her health is far more important. Carol explained the situation in a letter earlier this month...
"To my friends and supporters,
I would like to take a moment to thank everyone who helped me after I injured myself on the trail.
First to thank is Jean McCardle, my bed and breakfast host, who lives in the charming Victoria-by-the Sea. I spent many days with her. She is a wonderful woman. During my stay, she kept an eye on me, shared her wonderful company, found a massage therapist for me, and took me to some very interesting venues.
Also, a major thanks to Mr. Kendrick of Island Experiences and drivers Ann and Bill Jamieson who were most helpful.
Here in Waterloo, I would like to thank my health team who saw me this past Monday and Tuesday. Thank you to my excellent MT Steve Foley, my chiropractor Dr. K. Moeller, and Dr. M. Torreiter who did acupuncture on me and set me up with Eric Bauman for the afternoon. He is my physiotherapist. I will continue to see them in the next few weeks until I am healed.
I also want to thank the 3 sets of folks, two in PEl and one here, who gave me cash donations for the fundraiser after I had injured myself. I am so, so grateful for your kindness. Merci Mille Fois.
Thanks to Dr. S. Pasternak, as well, for emailing me to lend his support regarding my injury.
Upon arriving home, I was diagnosed with Gluteal Tendinopathy in my hip. I will have to take the utmost care to adhere to the program Eric set out for me so that I can heal. He said it can take anywhere from a month to three months for complete healing. My movement is limited but I can still do short, light swims and two short walks daily at a “moseying” pace.
I will continue to work on healing this ol' left hip of mine so that I can hopefully walk some in our local area as an alternative in the future.
I also want to thank my amazing LBD partner, Joe Daniel, for his constant support as well as members of my family and all my wonderful friends.
So, where does that leave us? Carol is recovering well but due to some unforeseen medical circumstances in my own life... we are still waiting to hear from the professionals and figure it all out. With that being said, we do plan to have the interview with Dr. Pasternak up in the next few weeks on our YouTube page and are looking at doing some sort of CLBDI event later in the summer. It's a hard thing to reckon with but some things are just beyond our control so we are taking it one day at a time.
Ashley, our liaison at UWO, will be getting in touch with us next week with an updated donation total for June. We know that money from the Robert Edward Schmidt Trust and some other memorial donations that have come in this past month. We also have a donation to make in the next few weeks that includes the money raised with the CLBDI cards from earlier this year and cash donations from anyone who donated to Carol directly. Ashley will be updating us one more time at the end of the month and we expect to be close to $60,000 in total donations by the fall. Simply amazing.
So, for now, keep your eyes on the CLBDI Facebook page for updates and hopefully we will have more to share at the end of July.
5/29/2023 0 Comments
Hello Lewy Warriors!
As May comes to a close and we are only days away from our founder Carol starting her adventure on Prince Edward Island walking the Island Walk trail to raise awareness about and funds for Lewy Body Dementia research, we are so happy to share that we've surpassed not one, not two, but THREE major donation milestones since February of this year. We are so overwhelmed by the generosity of our community and excited about our organic growth. Most of the last few months have been focused on preparing for "The P.E.I. Project", so to see this much of a bump in donations has been incredible. As of Friday, May 26th, we've raised $55,257 for Lewy Body Dementia research in Ontario. Simply AMAZING. Thank you to everyone who has donated, shared our story, or been involved with CLBDI in any way. We will be updating our donation total throughout the duration of Carol's walk across P.E.I. and into July so if you are interested in supporting Carol's journey, you can scan the QR code on the photo above, visit our donations page, or click this link: .
In other news, we've launched our own Instagram account (@canadianlbdinfo) where you will be able to see photos from the trail, original content, and LBD information and resources posted regularly. If you're on Instagram, please consider giving us a follow and sharing some of our posts. Everything helps, no matter how little. CLBDI is a purely grassroots project with no sponsorships and we appreciate anything people do to help us gain visiblity. We've also added a few new LBD-related links and books to our ever growing LBD Resources page this past month. Be sure to check it out.
In only a few days, our founder Carol will be boarding her flight and heading out on her adventure, but before that she wanted me to share a few words about "The P.E.I. Project". She writes, "My motto in life is “One day at a time” so I will enjoy each day as it comes. I am ready to meet amazing folks on this Island Walk, as it is officially known, and I know my Bob will be there with me. Thank you to everyone who has donated so far. See you when I get back." If you'd like to see some views from the Island Walk trail and get an idea of where Carol will be walking, check out this beautiful video from Osprey Cove Productions on YouTube.
As far as next month goes... Our yearly donation from the Robert Edward Schmidt trust fund will be happening, as well as the delivery of some new original content that will take you into the world of LBD research, and you can expect regular updates to the website and Facebook. We'll also be sharing stories from the road, photos, and updates from Carol as she walks across Prince Edward Island.
We're wishing Carol a safe, fun, and empowering walk as she readies herself for her walk. It's been amazing to see this come together and everyone, myself included, is so very proud of her. I hope she has a great time and meets tons of awesome new people.
That's it for May. We'll see you at the end of June.
Hello Lewy Warriors!
It's the end of another month and, as promised, we have LOTS of news to share. We hope everyone had a wonderful April. The warm weather is just around the corner and we can't wait for summer.
First and foremost, we've updated the "LBD Resources" page of our website throughout the month and added a bunch of great links, articles, and new LBD-related books (including the latest release from our friend and Lewy Warrior J.J. Johnstone). We will be adding more to the site in the coming months and I suggest you check back regularly. We always welcome new suggestions and encourage people to send us anything you feel that should be on the page or things that we may have missed via our website's contact boxes, Facebook, or email.
Now, on to the exciting stuff! We are thrilled to announce our first Summer event - "The P.E.I. Project"! Our founder Carol is going to be walking P.E.I.'s answer to the El Camino trail in Spain to raise funds for and awareness about Lewy Body Dementia! She will be travelling solo and updating us every few days with pictures, stories, and news from the trail that we will be sharing online for everyone to see. The whole event will be a month-long trek across the island from June 1st until July 2nd.
Instead of creating a Gofundme or other online fundraiser, Carol would prefer that donations be made to Dr. Pasternak's LBD Research at University of Western Ontario via their direct donation (you can do so here). Ashely, our fantastic liaison at UWO will be updating us every two weeks with our new donation total so that we can track what we've raised from today onwards. Over the next week or two, more information will become available on our website and Facebook pages, including a digital flyer with a QR code that links directly to the donation site. This is a huge undertaking and we're so excited and proud of Carol. We hope everyone will share our updates and promotional materials far and wide to show her how much we support her and everyone else who has been affected by Lewy Body Dementia.
Because of this, we will also be launching our Instagram account this month! We havre plans to branch out to other social media platforms in the coming months and to release more original videos on our YouTube channel. Please consider subscribing if you're interested in more great content. We've got lots in the works. We are also looking at hosting or being a part of more community events over the summer and into the fall. More information will be coming your way soon but, for now, our focus is on this walk.
We wanted to thank everyone who follows us or has joined our cause over the last few years and we can't wait to see what the summer months bring. We have a wonderful growing community and, although we are "small potatoes" as Carol always says, we can see that we are making some actual change and helping in the race to better understand LBD. We're hoping to pass some major milestones by the end of the summer but we can't do it without your help. Every donation, like, share, comment... it all helps! No matter how small.
That's all for today! Keep an eye out for more info on "The P.E.I. Project" and our new social media links!
3/31/2023 0 Comments
Hello Lewy Warriors!
Can you feel it? The weather is warming up and spring is right around the corner. We've got some amazing things planned for when the sun is out but, for now, we'd like to recap our March and tease some exciting news about what we've got coming up.
Firstly, early this month we launched our YouTube channel and the first CLBDI webinar! We have been getting some great feedback and are already planning our next video. In this webinar, we cover some general information about Lewy Body Dementia, share some tips on caring for yourself as a carer and your Loved One with LBD, and offer suggestions on how you can help both at home and in the wider community. If you haven't had a chance to check it out here. Be sure to give us a follow and, if you're feeling generous, a like/share. Everything helps.
We also wanted to share a thank you to Mt. Zion church and staff for allowing us to be a part of their "Beneath The Surface In Waterloo" Lent speaker series. We had a wonderful time speaking about our LBD journey, sharing our experiences, explaining our mission, and talking with members of the church and community. Thank you to everyone who attended, those who made a donation in the days after our presentation, and for all your kind words. We will be out and about in the community more in the near future and can't wait to meet more amazing people like you.
As for our summer plans? Well, our founder Carol is planning something really amazing for our summer fundraiser and we cannot wait to announce it in April. No, it's not another art show... though we are looking at doing another show sometime in the future. We also hope to host some events in the region and, as previously mentioned, get out into the community and speak more.
Keep your eyes on our Facebook page in the coming weeks. Lots to share.
Thank you to everyone who has donated, shared, liked, or reached out to us in March. Our little project keeps growing and growing but only with the help of people like you. We're proud of our community and everything we've been able to do together.
We'll see you in April.
2/26/2023 0 Comments
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:
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,
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!
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.
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!
The CLBDI blog is run by Advisory Board member Joseph Daniel.