Hello, Lewy Warriors!

September has come and gone and, after a little time away to rest and recharge, we're about to kick it in to high gear for the rest of the year.

Before we outline our upcoming plans, we wanted to say a heartfelt thank you to Michelle Martin of The Alzheimer Society Waterloo-Wellington for hosting us earlier in the month and giving us such fantastic advice/guidance. If you haven't, please check out their website for a whole swath of resources, educational material, and events in the Waterloo region. We're looking forward to continuing to build our relationship and connecting with the other fantastic LBD and dementia-related programs and organizations across North America and the world. You can visit their website by clicking here. 

As mentioned last month, we will be starting to roll out the updates to the CLBDI website for better functionality and a more user-friendly experience later this month. The first update to our site has already been rolled out... our new email! You can now reach us at [email protected]! Our previous email no longer works, so please make sure you are contacting us at our new address. Following this, the next of the planned updates will be to the LBD Resources page. We intend to clean it up, making it easier to navigate, better organized, and more accessible for all users.

From there, we will be updating some of the LBD information on our site and reorganizing the other pages to make them more intuitive and user-friendly. After this, we will be taking CLBDI down for a short period to add the option of reading our site in French. All of these updates will happen one at a time, ensuring the site is never fully offline for more than a few days. Our Facebook page will continue to run normally throughout this period and will continue to provide updates, content, and reposts from the wider LBD community. We will also make sure to let everyone know when the updates will be happening and when the site will be back online.

In the next few months, we will be meeting with city officials, MPs, and MPPs to discuss various issues and facets of LBD that our communities, province, and nation are facing and will face in the future. We still want to hear from you! If you have any pressing thoughts or ideas for us, don't be a stranger. We welcome your input via email, direct message, or through one of the contact boxes on our website. With that being said, we believe grassroots campaigns work. Having your voice heard has never been easier with our CLBDI Advocacy Letter 2024 template. Use the template we've created as is, or add your own words and voice, to bring the conversation to your local, provincial, and federal representatives. A rising tide lifts all ships and together, we can make a difference. All it takes is a little time out of your day.

In the coming months, we are planning to host another online art show to raise funds for LBD research at the University of Western Ontario in lieu of a holiday fundraiser. We'll have more information on that very soon. Also, if you're looking to do some good this holiday season, consider donating to the research at UWO online or through the various options outlined on The LBD Research Fund & Donations page of our website.

Before the end of the year, you can expect a new episode of "CLBDI Talks" and updates on some of the previously mentioned events like the local and online LBD support groups, visiting the lab at the University of Western Ontario, and more. We have plenty of things in the works but we want to meet with our Advisory Board and make sure we have everything locked in before we officially make any announcements. Just know that we're gearing up for an exciting final quarter of 2025. Keep an eye on our Facebook page for more regular updates.

In the meantime, we hope you have a wonderful October and a Happy Thanksgiving. We'll see you in a month!

All the best,
​Joe

Hello, Lewy Warriors!

​Can you believe that August has come to a close already? We hope everyone had a lovely end to their summer and that you're excited for the fall. We took some time off this month but still have plenty to share, so let's get to it!

Our new episode of "CLBDI Talks" with Mary Lou Falcone is available to stream on the CLBDI YouTube channel, our LBD Resources page, and right above this blog post. It was a tremendous conversation on the writing of Mary Lou's recent memoir, her journey to LBD advocacy, caring for her late husband Nicky Zann, art and music therapy, and so much more. We are so grateful for her time and have heard nothing but positive feedback. Our goal is to get one more special episode out to you before the end of the year. In the meantime, you can watch all of the previous episodes for free on the "CLBDI Talks: Full Series Playlist" on our YouTube channel. Leave a comment and let us know what you think! If you know anyone who would like to be on the show, reach out to us via email or the contact form on our website.

Coming up in September, we will be meeting with some of our fellow LBD and related neurodegenerative disease-based organizations to build a stronger community and deeper connections. We've still got lots of plans to meet with local, provincial, and federal politicians to discuss the future of LBD in our neighbourhood, province, and nation. With that in mind, we're asking you for your thoughts - Given the chance, what would you would like to discuss with them? What is most pressing and important for you to see changed in our communities? What has challenged you as a carer or someone living with LBD? Have you had discussions with your Loved One about what would make our communities more inclusive for them?

Let us know via email, comment, or through our website's contact box.

We also will be updating the CLBDI website over the next few months. We're very excited to make this site even better for our visitors and community. We also aim to offer the CLBDI website in both English and French very soon. With all these changes on the horizon, you can expect that the site will be down from time to time as we roll out the new updates. So, if you come to find that the site is not loading, don't worry. That's just us tinkering away and making CLBDI better than ever. We'll try our best to minimize disruptions and keep the site up and running. If the site is down, feel free to contact us via Facebook, email, or on Instagram and we'd be happy to assist you.

Also coming soon will be updates on the CLBDI support groups, fall and holiday events, another fundraising art show, and more. For now, we hope you're enjoying your Labour Day long weekend and the end of the summer. We'll see you again in a few weeks.

Best,
Joe

Hello, Lewy Warriors!

We've reached the end of July so it's time to recap this month and look forward to August and September. To start things off, we'd like to share that we've raised $117,117.05 in total donations! Wow! We're blown away by the support that we continue to receive and are humbled by the generosity of our community. Thank you all for helping us reach milestone after milestone and for being a part of this journey with us. We couldn't do it without you. All funds raised go directly to Dr. Pasternak's Lewy Body Dementia research at the University of Western Ontario and are helping make a difference right here in our own backyard.

Earlier this month, for example, Dr. Pasternak announced the publication of one of his studies into treatment of the disease using a European cough medicine called Ambroxol. It is a potential treatment that shows promising results. You can read more about it by clicking the links below.

The journal - https://jamanetwork.com/journals/jamaneurology/article-abstract/2835760
A CTV news report on the study - https://www.ctvnews.ca/london/article/a-cough-medicine-could-hold-new-hope-in-the-fight-against-dementia-research/

We will not be getting another donation total until the end of the year but are always accepting more donations. Head over to the The LBD Research Fund & Donations page for more information on how to donate.

We've also just finished recording our new episode of "CLBDI Talks", which will be dropping in mid-August. For this episode, we sat down with author Mary Lou Falcone to talk about her memoir, "I Didn't See It Coming: Scenes of Love, Loss and Lewy Body Dementia", which chronicles the Lewy journey shared between her and her soulmate of forty-seven years, the celebrated artist Nicky Zann. We also spoke about her time with the Lewy Body Dementia Resource Center and the power of music and art therapy in relation to dementia. It was an incredible conversation and I highly recommend checking out the episode when it drops. You can learn more about Mary Lou (and purchase her memoir) by visiting her website.

Also in July, we saw the departure of Brian Rainville from our Advisory Board. We thank him for his time, advice, and support of both CLBDI and Bob. We wish him all the best and appreciate everything he did as a member of the Advisory Board. Thank you, Brian. You'll always be part of the CLBDI story.

Looking forward to the next few months, we have a few things in the works! We will still be connecting with various other LBD and dementia platforms in preparation of our meetings with local, provincial, and federal politicians in the fall. We're also slowly putting together our online support group, planning to revamp the site and add a French language option, and looking at hosting another holiday art show to raise funds for LBD research. Our next Loonie Loops Walk is also in the works! We'll be announcing the walk, which will happen in September or October, in the coming weeks. We had so much fun the first time that we are running it back for round two. We wanted to thank Savio, Natalia, and everyone else who joined or supported us on the last Loonie Loops walk because we raised over $300 for LBD research. We can't wait to do it again and will have more information for you soon.

That's all from us for July. We hope you had a great summer so far and your August is filled with sun, relaxation, and joy.

Best,
​Joe

Hello, Lewy Warriors!

Another month has come and gone! We're back with another monthly update on all things CLBDI. Before we get into what we've been up to, we wanted to remind everyone that the deadline to be included in our next donation total update is just around the corner. If you'd like to donate to LBD research in Ontario and help us continue to smash our goals, visit the online donation landing page to donate online or visit The LBD Research Fund & Donations page for information on how to donate via phone, mail, and more.

We will be sharing the new donation total in late July or early August and we're so excited to see how much we've raised together. Visit our Facebook page to see the new total as soon as possible.

June was a busy month for us as we line up meetings with local MPs and MPPs to advocate for better care, less stigma, and a dementia-friendly future. We're also going to be meeting with folks from projects and platforms like the Alzheimer Society Waterloo-Wellington, the Lewy Body Dementia Resource Center, and more. Let us know if you have any burning questions you'd like us to ask or topics you feel like we should cover in our conversations!

This month, we held our first Loonie Loops walk of 2025. It was a wonderful and productive afternoon spent in Uptown Waterloo. We've also raised well over $200 (final count pending) for LBD research at the University of Western Ontario. We had so much fun, in fact, that we are going to do it again in August! We wanted to thank everyone who came to walk with us, everyone who donated, and send a special thanks to Dani and the team at Café 22 for hosting us and supplying us with warm drinks after the walk. More information on our August walk will be coming your way in July, so keep an eye out for that.

Good afternoon, Lewy Warriors!

Another month has come to an end, and we’ve got some excellent and exciting updates to share. Firstly, we’ll be getting an updated donation total in July from our liaisons at the University of Western Ontario. We’re excited to see how far we can reach past our previous goal of $100,000! If you’d like to make a donation to Lewy Body Dementia research in Ontario and help us reach our goals, visit the website for all sorts of information on how to donate online, by mail, or over the phone. Thank you to everyone who has donated their time, energy, or interest to our cause. We appreciate you more than you know, and together we're making a difference here in our province that has the potential to extend across the globe.

In only a few days, we’ll be releasing the newest episode of our “CLBDI Talks” interview series! This month, we sat down with the amazing Norma Loeb, Founder and Executive Director of the Lewy Body Dementia Resource Center! We had an amazing discussion on her journey as a carer and with the LBDRC, what she is most proud of, and so much more. We wanted to thank her for taking the time to chat with us. We’re so excited for everyone to tune in. Visit the CLBDI YouTube channel (https://www.youtube.com/@canadianlbdinfo) to watch all our previous episodes for free today!

Coming later this month is the first Loonie Loops fundraising and advocacy walk of 2025! On Saturday, June 28th, we will be walking the Uptown Loop trails in Uptown Waterloo to raise funds and awareness for Lewy Body Dementia. Following the walk, there will be a sit-down networking and discussion community event with hot drinks provided by a wonderful local café. We will also be raffling off some sweet CLBDI merchandise for everyone who joins the event. All are welcome, and fundraising is not necessary! Send us an email at [email protected] for information on the event and to RSVP so that you can attend the post-walk event. This also ensures that you will be entered into the raffle.

We’re also working on another CLBDI art event for later in this year and cannot wait to announce some of our other summer initiatives, including more community events, speaking engagements, the support group, and more. We’ve also been speaking with local MPs and MPPs in the hope of shining a light on CLBDI's mission and the state of dementia care in Ontario and Canada. Make sure to follow us on Facebook (https://www.facebook.com/CanadianLBDInfo/) for more up-to-date announcements and LBD content from across the internet.

We hope everyone had a wonderful May, and we hope to see you out at the Loonie Loops walk!

Cheers,
Joe

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