Hello, Lewy Warriors!

Another month has flown by and we're in the swing of spring! We're wishing all who celebrate a Happy (belated) Easter! We have some exciting announcements to share with you today so let's get right to it.

April was a month of planning for us at CLBDI but we're about to kick off a summer of fun, outreach, and advocacy! First of all, we have a new episode of CLBDI Talks for you to enjoy! We sat down again with cognitive neurologist Dr. Stephen Pasternak to talk about LBD research, caretaking, and the importance of a strong support system. It was a fantastic conversation and we thank him for his time and expertise. This month, we're sitting down with none other than Norma Loeb, founder of the Lewy Body Dementia Resource Center! Her episode will be available in early June and we can't wait to share it with you.

Also in June, we'll be returning to the Uptown Loops walking trails to raise funds and awareness for Lewy Body Dementia. The Loonie Loops event will be back on Saturday, June 28th in Uptown Waterloo! Everyone is welcome to join us and walk for your Loved One, family member, friends, or community. We're reaching out to local businesses to help make this an even bigger and more fun event. We'll be starting our promotion soon (including how to donate and support), so keep an eye out for that.

We also are planning to (finally) visit Dr. Pasternak and his team in London next month to give you all a peek behind the curtain and check out the research lab. We can't wait to meet the team and learn more about what they do. You can expect all sorts of information and content related to our visit once we get home. Do you have any questions you'd like us to ask or anything you'd like to see? Let us know in a comment!

We wanted to take a moment to thank everyone who purchased a CLBDI Winter Hat over the last few months. They moved like hotcakes and were nearly out of inventory. We were able to donate over $600 to LBD research thanks to your kindness. Worried that you missed your chance? Great news! You can still get one by visiting our Community page or sending us an email (while supplies last). There may also be a chance to win one in the near future... keep an eye on our Facebook page in the coming weeks.

We're getting closer and closer to the mid-way point of the year, which means we're due for another update to the fundraising total. If you want to help us smash our next goal and support LBD research in Ontario, visit the The LBD Research Fund & Donations page of our website to donate online, over the phone, through the mail, and more.

Ok, that is all from us for April. We'll be back in a few weeks with more announcements for this summer and another monthly update. We hope you enjoy the warmer weather and that you have a lovely May.

All the best,
Joe

Good afternoon, Lewy Warriors!

March has come to an end and we're here to update you on all things CLBDI. Before we get into the big news, we wanted to let everyone know that we are almost completely sold out of our CLBDI winter hats and they will soon be gone. If you'd like to snag one for next fall/winter, now is the time to do so! We will be donating the funds raised from the hats throughout April, so you can still add to the pot. Visit the Community page or send us an email to order yours today.

Now, for the exciting news! We're absolutely over the moon to announce that we've surpassed one hundred thousand dollars in total donations to LBD research at the University of Western Ontario. In fact, the new total is actually ten thousand dollars more! We've raised an astounding $110,083.05 together. It's truly incredible what we've been able to do and we are endlessly grateful to our community and supporters for helping us get to where we are. The money goes directly to Dr. Pasternak's LBD research in Ontario and will be used to help better understand and treat the disease. As our founder always says, "Merci mille fois!" We cannot even begin to say thank you enough to everyone who has donated. We're floored by the generosity of the people in our community and we appreciate every single person who has donated their time, energy, money, and support to CLBDI over the years. We cannot wait to see where we go from here.

Speaking of Dr. Pasternak, he has graciously given us some of his time to talk about LBD, his research, and issues facing caretakers and patients alike in the new episode of CLBDI Talks. Due to some technical and scheduling difficulties, the episode did not release before this was written but it will be available by the end of next week. To make it easier to watch every episode and stay up to date, we've also created the "CLBDI Talks: Full Series Playlist" on our Youtube channel. We've got some exciting guests planned for the year and can't wait to share more video content with you.

You can find that playlist by clicking this link: www.youtube.com/playlist?list=PLXPk1oLipMXTfHk8fUJKEPgHa7qQe-4-t

Speaking of content, we are hoping to visit Dr. Pasternak and the folks at the University of Western Ontario in the near future and will be filming some of our visit. We hope to give you a deeper insight into the research, the team, and where your donations are going and share a peek behind the scenes of CLBDI. We also recently got in touch with the team behind "Facing The Wind", a documentary that explores the challenges faced by LBD patients and carers, and hope to do collaborate with them in the coming year. We plan to connect more with various programs, politicians, and networking opportunities across Ontario this year to build our presence and have our message heard. We've learned that we are far stronger when we connect and work together.

You can rent "Facing The Wind" online via Vimeo by clicking this link: vimeo.com/ondemand/facingthewind

By the end of April, we will have announced the next Loonie Loops walk in Waterloo as well as some other planned community events (both online and in person). We are excited to get out in our community, advocate for and meet with Lewy Warriors, and create some awareness about Lewy Body Dementia and CLBDI this year. We will be announcing events on our Facebook page first, so be sure to give us a like and a follow to get the news first.

Lastly, we wanted to send out a belated Happy Birthday message to our founder Carol. She celebrated her 85th birthday this past month. Can you believe it?! She is a prime example of someone driven to do good in the world and she shows us all that you can make a difference in your community at any age. She is a fierce Lewy Warrior, through and through. CLBDI wouldn't exist without her and we're proud to know her. We hope she had a wonderful birthday and are wishing her the best on her next trip around the sun.

We hope everyone had a wonderful March and we wish those who celebrate an early Happy Easter. We'll see you in a month!

Best,
​Joe

Hello Lewy Warriors!

It's the end of another month and we're rolling into 2025 with lots of exciting things to share. Although February was a bit of a quiet month as we prepare and plan for the warmer months (and deal with all this snow), we have been overwhelmed by the support we've received in regard to CLBDI merchandise and, more specifically, the new CLBDI Winter Hats. A huge thank you to everyone who has purchased a hat or placed an order in February. Our inventory is starting to run low on all of our merchandise, so now is the time to act if you would like to purchase anything and support LBD research in Ontario. Half of all sales goes directly to Dr. Pasternak's research at the University of Western Ontario and the first chunk is to be donated starting at the end of March.

Want to learn more? Get all the pricing information and place an order by visiting the Community page of our website or sending us an email.

We also took February as a chance to strengthen our ties with other LBD projects and programs and look forward to collaborating and connecting further with them as the year progresses. We have plans to host all sorts of community and online events, some of which will be revealed in the coming month. Keep an eye out for the next episode of "CLBDI Talks", which is slated to arrive before the end of the month, and some other fun online events on the horizon.

We've also been in touch with our liaisons at UWO and should have an amazing fundraising-related announcement to share in the next few weeks. We've been floored by the community support we've received, especially in the last few months, and can't wait to cross another milestone with the CLBDI community. More on that soon, though.

We understand that things are likely to get financially tough for many in the coming weeks and months. We wanted to remind our community members that your time and energy is as good as gold and change starts at the local level. There are many ways you can make a difference and advocate on a budget and all of them are very appreciated, impactful, and important. Reaching out to your MPs/MPPs about the future of dementia care (the CLBDI Advocacy Letter 2024 is a great place to start), volunteering, speaking to your friends and family, interacting with our posts on social media, etc. are all extremely valuable to our cause and relatively cheap ways to affect change in our community. Looking for a place to start? Want to educate yourself and find local programs you can connect with? You can find tons of free links and resources on the LBD Resources page of our website!

We hope everyone has a wonderful March ahead of them. Thanks for reading.

Best,
Joe 

Hello Lewy Warriors,

A belated Merry Christmas and Happy Holidays to all who celebrated! We hope the past week was filled with joy, comfort, laughter, and light. It’s the end of another month which means it’s time for another CLBDI monthly update. It’s also the last day of the year so we wanted to take a quick look back on everything we’ve accomplished in 2024 and look forward to what is coming in 2025.

​Let's kick things off with a look forward to next month and everything we have coming your way in 2025. In the coming weeks you can expect the launch of our new CLBDI hats (which look awesome and are super warm), an updated donation total, an announcement on the return of the “CLBDI Talks” interview series to our YouTube channel, and the soft-launch of our CLBDI Support Group.

The new CLBDI hats will be available to order online and will have a base cost of $20 (plus shipping or delivery fee). Half of all sales will go to Dr. Pasternak’s LBD research at the University of Western Ontario. More information on ordering will be available very soon. Thanks again to New Era Graphix and our board members Michelle and Marisha for all their help with the hats. We’re so pleased with how they turned out and can’t wait to see people wearing them. Check out one of the hats in the photo below:

We’re so pleased with what we’ve been able to do this year in terms of fundraising and we thank everyone who has donated this year. As of this past October, we had raised $81,012.17 for Dr. Pasternak’s research. Wow. We can hardly believe it and we can’t wait to see where we stand in a few weeks. We will have an updated donation total for everyone in early January.

Dr. Pasternak gave us an update on where the funds we’ve raised have been going so that we could share it with you:

“The funds have been used to support 2 graduate students. Diana Romadina just graduated from UWO with her Master’s degree and is studying how the protein Alpha Synuclein (which is important in Lewy Body pathology) moves inside nerve cells. You are also currently supporting Maxine Golden, a graduate student who is working for me on developing a blood test for Lewy Body disease and Parkinson’s disease.”

If you would like to donate, visit The LBD Research Fund & Donations page of our website. There, you can easily reach the online donation landing page or learn how to donate via phone, mail, or set up a memorial or legacy donation in memory of a Loved One.

We have also shared six episodes of “CLBDI Talks” since the end of 2023 and will be returning in 2025 with more content, more guests, and more great conversations for everyone to enjoy. We wanted to thank everyone who has been a part of the series this year and everyone who took the time to listen to/watch the show. Keep your eyes peeled for an announcement on the return of the series in the coming weeks. You can watch all six of our previously released episodes here: 

www.youtube.com/@canadianlbdinfo

In other exciting news, we plan to launch our in-person CLBDI Support Group this coming month and, if all goes well, open them to the public and eventually offer an online support groups as the year progresses. This initiative has been spearheaded by our founder Carol and we’re very excited to see it grow in 2025. Keep an eye out for updates on that as we move into 2025.

As for 2024, it was a challenging year personally for many members of CLBDI but we did our best to keep on keeping on. We held various speaking events in Waterloo, launched our CLBDI Advocacy Letter Template (which you can read and download on the CLBDI Advocacy Letter 2024 page), held a CLBDI Community Walk event in St. Jacobs (big thanks to EcoCafe for offering the space to meet after the walk and the support), spoke with many amazing and supportive businesses and community members on our Community Outreach event in Uptown Waterloo, raised awareness and funds with the first ever “Loonie Loops” fundraising walk, celebrated five years of CLBDI with our family and friends, and more.

In 2025, we hope to host more community events, organize another “Loonie Loops” walk, update our webinar, speak at more events, and grow within our community. Thank you again to everyone who has been a part of this project in any way over the past year. We've been enjoying a bit of quiet time to reflect as the year comes to a close and are so grateful to everyone in our CLBDI community. We appreciate each and every one of you.

​We wish everyone a wonderful, safe, and fun New Year’s Eve and we’ll see you all in 2025.

​All the best,
Joe

Hello Lewy Warriors!

We hope that everyone had a wonderful November. We're rolling into the last month of the year and holiday season with plenty to discuss and share, so let's get right to it.

​In case you missed it, The final CLBDI Talks episode of 2024 is now available on the CLBDI YouTube channel (https://www.youtube.com/@canadianlbdinfo). It features a lovely conversation with our founder Carol Schmidt on the last five years of CLBDI, the future of our project, and much more. It also features an urgent call to action for all Canadians from Dr. Stephen Pasternak. There is a lot to do, but together we can get the conversation going and move the needle. Need a place to start? Check out the CLBDI Advocacy Letter 2024. 

We will be back in 2025 with more guests, more video content, and more great conversations. Thanks to everyone who has been involved from the guests to the viewers. You can watch all six episodes from this past year for free on our YouTube channel.

Speaking of action, we've got a lot planned for 2025 including the start of our LBD Support Groups and more speaking presentations. We're also planning an updated webinar, more video content, more community events, more LBD presentations, and growing our presence across Ontario. Keep an eye out for updates on our social media accounts through December and into January as these plans begin to materialize and solidify. You can hear a little bit about our plans for the LBD Support Groups in the latest episode of CLBDI Talks.

This year, we have decided to forgo our usual Holiday Fundraiser for combination of a push to donate and new CLBDI merchandise. We will be getting the final donation total for 2024 in early January so there is still time to make a difference (and get a tax receipt) this year. In early 2025, we'll be sitting down with Dr. Pasternak to hear about all the ways your donations are helping the lab to study and understand Lewy Body Dementia. We are also only a few days away from the unveiling of the new CLBDI winter hat which will be available for purchase online in just a few weeks. Much like our first run of merch, half of all sales will be donated to Dr. Pasternak's LBD research so you can look good and feel good. We can't wait to see how they look on you!

Want to learn more about donations or make one yourself? Click here: The LBD Research Fund & Donations

​In November, we had some more great experiences speaking in the Waterloo Region and appreciate everyone who came out to hear what we had to say. Our last seminar was packed and such an engaging and wonderful experience for us. We got a chance to share our story and hear some of yours, heard some new and wonderful questions, and connected with new community members and Lewy Warriors.

This past month, Carol also did the first of her planned "Loonie Loops" walks in Uptown Waterloo. She walked all three of the Uptown Loops to raise awareness about Lewy Body Dementia and raise funds for CLBDI’s cause. She wanted me to thank everyone for sharing, donating, and supporting her on her walk. She also wanted to remind everyone that you can still make a difference in your community - even at 84 years old!.We received such wonderful and enthusiastic responses from the community. We cannot wait to get out in 2025 and do more in our region and all across Ontario.

Hello Lewy Warriors!

Happy (early) Halloween and Happy (belated) Thanksgiving! We've come to the end of another month so here is your monthly update on all things CLBDI. We hope everyone had a wonderful October.

Last week, we celebrated five years of CLBDI! Can you believe it? A small group of friends and family gathered for cookies, warm drinks, and a walk down memory lane. It's been an amazing five years of growth, learning, meeting and building connections with Lewy Warriors, and making a difference. From our various online and in-person art shows to our fundraising to our interviews to our Community Walks... we've had such a fantastic time and can't wait to see what the future holds. We'll be sharing a very special fifth-anniversary episode of CLBDI Talks with our founder in early November so make sure you subscribe to the CLBDI YouTube channel (www.youtube.com/@canadianlbdinfo) to be notified when it drops.

We also wanted to thank everyone who has been a part of this journey over the past five years. Thank you to all our Advisory Board members past and present, the staff at UWO, the amazing people we've met in our community, all those who have donated, and everyone else who has been involved in any way. We are so grateful to each and every one of you.

As we enter the final stretch of the year, we're so happy to announce that we've surpassed our expected fundraising goal for the year and are now above $80,000 raised in total for LBD research in Ontario. We're absolutely overjoyed and can't wait to see where we are in January. We definitely couldn't do it without the support of our amazing community so, as Carol always says, "Merci mille fois!"

Speaking of fundraising, Carol will be walking the "Loonie Loops" next month in Uptown Waterloo to raise funds and awareness about Lewy Body Dementia. We'll be announcing dates and information in early November. You can support by joining her on a walk, donating to LBD research, or sharing our posts!

Want to support? Visit the The LBD Research Fund & Donations page to learn how and make a donation!

Also coming in November will be the designs for the next run of CLBDI merchandise - warm winter hats for the colder months! They'll be available in December and will make a feel-good Christmas gift as half of all the money from sales will go directly to Dr. Pasternak's LBD research at UWO at the end of the year. Follow us on Facebook to get an early look the design and the information on how to make an order.

Well, that's all from us for October! We hope everyone has a fantastic Halloween and we'll be back in November with information on our LBD Support Group, our holiday plans, and more.

Best,
Joe

Hello Lewy Warriors!

We hope everyone had a wonderful summer and you're all ready for the holiday season. We are so excited to enter the last quarter of the year and have lots to update you on and announce. Let's get right into it!

Firstly, we have released a new episode of the "CLBDI Talks" interview series on our YouTube channel. This month, we sat with Michelle Martin, Executive Director of the Alzheimer Society Waterloo-Wellington, to talk about the Alzheimer Society, their two Landmark Studies on dementia, and the future of the disease in Canada. This was a wonderful and interesting conversation that also covered a wide variety of subjects including how the Alzheimer Society operates, what they offer people in the region and across Canada, advocacy, education, support, and so much more. You can watch it above or on our YouTube channel! We've got another episode coming in October featuring a conversation with our founder Carol Schmidt about CLBDI, our journey, and the future.

We're celebrating five years of CLBDI this October with a small celebration, more CLBDI content, and more ways to support. Our founder will soon be walking what she dubs the "Loonie Loops" in Uptown Waterloo to raise awareness about and donations for LBD research in Ontario. We will be posting updates on our Facebook and Instagram, so be sure to check us out and give our page a follow.

Want to donate and support LBD research in Ontario? Click here: The LBD Research Fund & Donations

We also have new merchandise coming very soon, if that's something you're more interested in. You'll soon be able to get some spiffy new CLBDI toques to keep your head warm this winter. Plus, with the holidays coming, they'll make a wonderful Christmas gift that you can feel good about. Half of all sales goes directly to Dr. Pasternak and his research team at UWO. More information, including pricing and design, will be released over the coming months.

We are also working to create a local support group for LBD patients and caregivers to connect, share stories, and find other Lewy Warriors in the Waterloo Region. If all goes well. we plan to expand to online support groups as well. This initiative won't launch until 2025 but we're so excited to offer a place for people to find support and community locally. Keep your eyes peeled for more updates as we get closer to the end of the year.

Lastly, we urge everyone to check out our CLBDI Advocacy Letter 2024 and consider sending a copy to your MPs and MPPs. If you've been following what's been happening with LTC homes and medical/support workers in our province, you will realize how important it is to start the conversation and call our politicians to action to improve the systems of support for people with dementia. It's only going to get more challenging from here and these discussions should have started years ago. Join the chorus of voices asking for accountability, change, and support from our politicians today.

That's all from us! We hope everyone has a wonderful October and we'll see you in a month.

Best,
Joe

Hello Lewy Warriors!

August has come to a close and, as usual, we're taking a moment to look back on the past month and forward to the future! First and foremost, we hope everyone has had a tremendous summer and you all get a chance to enjoy yourselves over the long weekend.

August was mostly spent preparing for the various exciting things we have planned for the fall but, thankfully, we did get out and about in Uptown Waterloo for our Community Outreach Walk! It was a wonderful Saturday afternoon spent in Waterloo. We met some fantastic people and connected with some amazing businesses in the region. If you keep an eye out, you might even see some of our flyers posted in some of your favourite establishments. Do you want some flyers to place at your work? Send us an email! We'd be happy to speak with you and make it happen.

The next CLBDI Talks interview is going to be releasing mid-way through the month and will feature a very special guest to talk about a fantastic program in our region and across Canada. We cannot wait to share it with you! Following this, we'll have a very special five-year anniversary episode with our founder Carol to look back on CLBDI's journey and everything we've done in the past five years. You can catch up on all the old episodes of CLBDI Talks here:

https://www.youtube.com/@canadianlbdinfo

Speaking of our five-year anniversary... we will definitely be doing something to celebrate in October! Keep an eye out for more information about how you can join in on the celebration and for special online anniversary event announcements and content!

With fall just around the corner, we have begun planning for this year's holiday season and will definitely be doing some sort of holiday fundraising event this year. We've also been feeling like it's time for new merch! Perhaps something for you to wear as the weather gets colder? More information on that will be available at the end of next month.

Lastly, we wanted to wish a fond farewell and best wishes to Ashely Irvine, our liaison at UWO, who will no longer be working with us. We deeply appreciate all her support and everything she has done for CLBDI. It's been our pleasure. We also wanted to welcome our new liaison, Tommy, and mention that we've updated the contact information for donations on our site. We're looking forward to working with her going forward.

That's all for us! Have a fantastic September!

Best,
Joe

Hello Lewy Warriors!

We hope everyone had a wonderful July and your summer has been pleasant so far. We've had to take most of July off due to some unexpected complications outside of CLBDI but we do have some good news to share and plans for the rest of the summer and fall.

First and foremost, we received our new donation total from our liaisons at UWO. As of early July, we've raised an astonishing $73,707 for LBD research in Ontario. Fantastic! Amazing! We cannot thank our community members and supporters enough. Because of your generosity and support, we're making a tangible impact. Furthermore, we're hoping to have a more in-depth update on the use of these funds and a look behind the scenes when we visit the lab sometime in the next few months. We'll get another update at the end of the year and are hoping to surpass our next goal of $75,000 by 2025. If you would like to donate online or via phone/mail to help us get there, click this link: The LBD Research Fund & Donations

You might notice that we've added some more links and resources to our LBD Resources page over the last few weeks. We have plans to expand and update the site over the coming months to make it more intuitive, interactive, and easier to navigate. More details on that soon.

In August, we'll be heading to Uptown Waterloo on what we're calling our "Uptown Community Outreach Walk". That's basically a fancy way of saying that we're getting out in the community to do some on-site promotion through education and outreach. We'll be walking all throughout the city, so if you see us... say hi! We'd love to tell you about CLBDI and answer any questions you might have about Lewy Body Dementia, CLBDI, and dementia in Canada. Check out our Facebook page (www.facebook.com/CanadianLBDInfo/) for more information on when and where we will be. We're working on the next CLBDI Community Walk event for September and planning something exciting to celebrate 5 years of CLBDI in October.

Later in the month, we will be hosting our first online hangout and Q&A session along with sharing our plans for more online events throughout the year. We're also hoping to have the next episode of CLBDI Talks available on our YouTube channel by the end of the month or in early September. Have checked out our YouTube channel yet? Click the following link to visit our channel and watch all the previous episodes:

https://www.youtube.com/@canadianlbdinfo

Don't forget that we have our CLBDI Advocacy Letter 2024 template available for free in multiple formats on our website. Use it as is or make it your own, the choice is yours. It's a quick and easy way to get the conversation about the future of dementia care started with your representatives.

We also have some updates to our Advisory Board and other plans for the fall and holiday seasons to share. You can expect to hear more about that in the next blog post. For now, we just want to wish everyone a fantastic August.

All the best,
Joe