11/29/2023 0 Comments
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!
10/29/2023 0 Comments
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!
9/29/2023 0 Comments
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.
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,
The CLBDI blog is run by Advisory Board member Joseph Daniel.