Good Afternoon Lewy Warriors!
It's the end of the month which means it's time for another monthly update! May has been another month of working behind the scenes and gearing up for this summer's events. We're inching closer and closer July which means that we are weeks away from the launch of the next art show's promotional material and event rollout. We're shooting all of the paintings and prints over the next week or two at a wonderful studio in Kitchener and then we will begin to share more information including the show's poster, dates, and more. Keep your eyes peeled!
We also finally met with our liaisons from UWO, Emily and Ashley, for a lovely lunch. We discussed our plans for the future, brainstormed some ideas and had a wonderful time. We wanted to thank them both for their support and all that they've done for CLBDI over the past few years. They have been an integral part of CLBDI and it was so nice to finally meet them in person. They let us know that, even though we haven't been running fundraising events through the first two quarters of 2022, we are still receiving donations and reaching new people. Though I do keep track of our website's traffic, it is amazing to hear that people are not only donating but also finding our website and community helpful and inspiring.
You might have noticed that we've added a territorial acknowledgment to our homepage. We chose to do this because CLBDI stands in solidarity with and respects the Indigenous Peoples of our region and across Canada. It is our formal statement recognizing the enduring relationship that exists between Indigenous Peoples and their traditional territories.
Also, coming throughout this summer and fall will be our expansion onto other social media platforms and more original CLBDI and Lewy Body Dementia-related content. We have plans to launch our YouTube page (finally) and to get on Instagram and Twitter. Be sure to give us a follow when we launch!
In case you missed it, the Intentional Lewy Body Dementia Conference is coming up on June 15th and 16th in Newcastle, England! The ''Living With Lewy" strand of the event (done in collaboration with the Lewy Body Society out of the UK) is free to attend both physically and digitally for any caretaker, medical professional or dementia patient. It features tons of amazing speakers such as Norma Loeb, Susan Williams, Timothy Hudson, and more. If you are interested in attending, click here to browse the programme and fill out a registration form. It should be noted that since this is happening in the UK, the times indicated on the agenda are UK times. That means that for those living in Eastern time zones, the times indicated are actually 5 hours ahead, for Central time 6 hours ahead, for Mountain time 7 hours ahead, and for Pacific time 8 hours ahead. The conference will also be recorded and will likely be available online for those who cannot attend.
That is all for today but we will be posting multiple times in June as we move towards the launch of our second online art show. Check out last month's update for more information on the show including some links to some of our featured artists and visit the Community page on our website to read all about last year's show.
Have a wonderful June!
Hello Lewy Warriors!
We hope that you've had a wonderful month and are enjoying the warmer weather as we progress toward the summer. We are almost ready to start the rollout for our next online art show and can't wait for you all to be a part of it. This year we are featuring pieces from seven different artists including our founder Carol Schmidt, Kitchener based painter and illustrator Alan Daniel, Pennsylvania based abstract artist Megan Bechtold, B.C. based painter and digital artist A. Claire, and more. As with last year's show, all proceeds will be going to Dr. Pasternak's LBD research at UWO. We wanted to thank all the artists for donating to this show and allowing us to have an even bigger event this year.
You may have also noticed that the site has not yet been translated! As we've previously stated, we've been taking our time to find the best possible option for translation and, unfortunately, the whole process is taking a bit longer than expected. It will still be happening though and you might notice some changes to the site over the next month or two. We are also looking to branch out into other social media platforms and into the wider community. Soon you will be able to follow us on Instagram and, over time, many other platforms. We'll finally be launching our Youtube account in the next couple of months as well. Expect some more information on that in the near future.
We also wanted to highlight that we have updated the "LBD Resources" page regularly over the last few months and added a selection of new links and content including "Forward With Dementia", "Lewy Body Ireland", and so much more. If you haven't browsed our site in a while, take some time and check it out. You might just find something new!
And, lastly, we are excited to share that we are almost out of the first run of our CLBDI shirts! We have been sending out orders this past week so if you ordered a shirt recently, it should be arriving next week. Thank you to everyone who has been ordering shirts in the new year and we will be donating funds from shirt sales to Dr. Pasternak with the total from the next art show. If you haven't yet ordered yours, visit our "Community" page and get one before they run out.
That's all for us this month. We wish you the all best in May.
Hello Lewy Warriors!
We hope you have all had a wonderful March. We don't have a whole lot to update you on this month so this will be a short blog post. We do have a bunch of plans that are really starting to come together for the summer months, so expect some updates and information on these events in the next blog post at the end of April.
What we can tell you today is that we are finally working on having our site translated so that we can offer an English and French version of the Canadian LBD Information website. This process has been slow going as we're taking extra time to find a translation service that understands the importance of medical terminology and will give us a proper translation of those words. We don't want anything to get lost in translation. That update to the site should be coming in the next month or two and when it does happen, we may have to close the page down for a day or two. Don't worry though, you will be given plenty of heads up and our Facebook will remain active during the downtime.
Secondly, we have had to move the date of the second CLBDI online art show to July due to some personal things happening behind the scenes and have decided for various reasons that it will remain as an online-only event. This means that there will no longer be an actual in-person art show. We are sorry if anyone was looking forward to that but this will be safer for the public. We're looking forward to announcing more information on the show at the end of April.
With that being said, we are looking at hosting some sort of outdoor CLBDI event in the summer, so there will still be a chance for us to (hopefully) get out into the community and see some friendly faces.
And, lastly, there are still a few CLBDI shirts left! Our stock numbers are dwindling fast and some of the sizes are completely sold out, so if you wanted to get a shirt... the clock is ticking! Check out the design and place an order on our "Community" page.
That's all from us this month. We hope you have a wonderful April.
Hello Lewy Warriors!
We hope you had a wonderful February! We're here to fill you in on what we've got coming this Spring and everything that has happened in our world this past month. Much like January, February was another quiet month for everyone at CLBDI but, as always, we have been busy planning for the future. You can expect tons of content and events coming your way as the weather gets warmer.
First and foremost, we passed the second anniversary of Bob's passing earlier this month and saw the release of a wonderful article by Valarie Hill on Bob's life and journey with LBD in the local newspaper, The Record. If you missed it earlier this month, you can read the article by clicking this link:
We also had our first ever financial report with our Advisory Board and brainstormed with them on some of our plans for the coming year. We wanted to thank them again for lending their advice and support to everything we do here at CLBDI. We've also decided not to run a Spring Fundraiser this year and focus on our next online (and possibly in-person) art show. We're happy to announce that the show will be coming in late June and that we are bringing Carol and at least 4 other artists together to raise money for Dr. Pasternak's LBD research. We're hoping that if the pandemic situation becomes more agreeable, we will be able to show this one in person too. Either way, it's going to be so much fun.
We have also been busy connecting with other Lewy Body Dementia organizations across the globe and building relationships in an effort to better connect everyone with the information they need and share that information/content more freely. This includes being featured on the "Forward With Dementia" site, getting in contact with the "Purple Sherpa" team, and so much more. As time goes on, we hope to continue to build an LBD network both locally and abroad. One of our goals has always been to make things easier for anyone who wants to learn more about this disease or connect with the many great LBD communities online.
As always, we continue to update our Resources page with new books, content, links and more. Be sure to check it out as it is an ever-growing archive of Lewy Body Dementia information.
And lastly, we still have a few more shirts available to order. This is a one-time printing so if you like the design, now is that time to get yours! For more information and to place an order before we run out, visit the "Community" page of our website. If this design isn't for you, we are still planning on doing another run of merchandise this summer, although it may be a different type of merchandise altogether next time around! Keep your eyes peeled for more information.
Thank you all for your support.
Hello Lewy Warriors!
In case you didn't know, this past Tuesday was the two year anniversary of Bob's passing. This year, to commemorate the occasion, we added a piece of writing from Brodie Schmidt, Bob's eldest granddaughter, to the "Bob's Memorial" page of our website. It was also the publication date of an article written about Bob in our local newspaper (The Record). We just wanted to let you know that you can now read that article online on The Record's website. Wonderfully written by Valerie Hill, this article sheds light on who Bob was and his journey with Lewy Body Dementia. We have added a link to the article below and have also shared it on our "LBD Resources" page and the CLBDI Facebook page. Thank you Valerie for writing about Bob, CLBDI and sharing his story with the wider community.
Click the link below to check it out:
We hope you have a wonderful rest of the month and we'll see you in a few weeks for the February blog update.
Good Afternoon Lewy Warriors,
We're back with the first monthly update of 2022! We hope that you had a wonderful start to your year and are all safe, surrounded with supportive people and feeling good. This will be a rather short blog post as we only have a few things to share with you this month. First of all, we wanted to let you know that our contact at UWO, Emily Grass, has let us know that as of Jan. 13th, our donation total sits at $28,561.00! Amazing! We're so close to our second goal of $30,000.00 and it is all thanks to you. We're so grateful and humbled by our incredible community and all that we've been able to do together in just a few short years.
January was a quiet month for us as we traversed through another province-wide lockdown and regrouped after the Holiday Fundraiser. We've been working away, planning for our next online art show and doing lots of clerical work. We have also reached out and connected with some more great LBD-related resources and added them to the LBD Resources page of our website. We highly recommend that you check out the "Forward with Dementia" and "The Alzheimer Society Waterloo-Wellington" links as they are both great organizations that offer tons of support, information and content.
This month you can expect more information about the upcoming art show, an article on Carol's late husband Bob in Waterloo Region's local paper, The Record, on Feb. 8th (which is also the anniversary of his passing), and potential updates to the site including the option to translate our site to French! As spring gets closer, we will have more events lined up and lots more to share. Keep checking the CLBDI Facebook page for more up to date information, announcements and LBD-related content from across the web.
Thank you again for being a part of this wonderful community. We're wishing you all the best in February.
Hello Lewy Warriors!
We're back with our final CLBDI blog post of 2021! Can you believe that it is already over? It seems like this year just flew by. First and foremost, we hope that everyone has had a wonderful holiday season and that you all have a safe and fun New Year's Eve planned. We thought that we would take a minute to look back on everything that we've done together this year and celebrate the end of 2021 with positivity and gratitude.
I am so happy to announce that our 2021 Holiday Fundraiser's donation total is $1,623.95 (this includes a percentage of CLBDI shirt sales) and will be donated to Dr. Pasternak and his team tomorrow. What a way to end out the year! Thank you to everyone who donated their time, energy or funds to the fight against Lewy Body Dementia. A special shout out goes to Dean Widdifield who donated a whopping $500. So unbelievably generous of him. As Carol, our founder, says, "Merci Mille Fois!" We couldn't do it without all of you.
Although we have been dealing with the pandemic and things haven't really returned to "normal" throughout this past year, we've been so overwhelmed by the kindness and generosity of everyone in our community. We're proud of everything that we have accomplished together and can't wait to share the new donation total next month. For now, let's look back on some of the amazing things we've done together.
We started the year with the $1,100.00 donation from the 2020 CLBDI Holiday Fundraiser and shortly after we surpassed $10,000.00 raised in total donations. In the spring, we launched our first ever CLBDI online art show, "Our Emotional Journey With LBD" and received such amazing feedback and so many kind words. At the same time, we ran our Spring Fundraiser and together we raised another $4,625.00. We continued to work through the summer months, adding to our list of resources, updating the site, and planning for the fall. By midsummer, we had raised $22,241.00 in total and surpassed our first overall goal of $20,000.00.
In September, we surpassed $25,000.00 raised in total and welcomed a new member (Natalie Leitzmann) to our Advisory Board. We also began working more closely with the board members as we began to plan our first merchandise drop and brainstorm plans for 2022. We wanted to take a moment here to thank every member of our Advisory Board for lending their skills, energy and minds to what we do here at CLBDI. We look forward to continuing to work with all of you and are so grateful that you continue to be a part of what we are doing. Thank you.
In October, we launched our first ever CLBDI merchandise drop and have sold well over half of our inventory since. We have plans for the next drop already in the works but if you still haven't gotten one for yourself click here to learn more and place an order. In November, we launched our Holiday Fundraiser for 2021 and started sharing information about the next online art show that we are putting together for next year.
Finally, we arrived at December and the end of another year. We've got a feeling that we're past the $30,000.00 in total donations mark but we won't know until next month when we hear from Emily at UWO. We also wanted to take a minute here to thank her as well for all she does for us. It has been a pleasure working with her.
You can scroll through the CLBDI Blog and check out more of the minute details but WOW. Considering the circumstances, we've done quite well. We couldn't do it without such an amazing community. Thank you all so much for an amazing year of growth and so many positive experiences. Being a part of CLBDI has given me so much joy. To be able to help in the fight against LBD and to get to know so many wonderful people fills me with such light and pride. You are as much a part of this as I am and together we are making a difference. We cannot wait for 2022 and the future of CLBDI.
Wishing you all the best this coming year.
Hello Lewy Warriors!
It's the end of November already? Wow. This year has really flown by, hasn't it? I sincerely hope this post finds you safe, healthy and happy as we round the last corner of 2021. I wanted to take a moment to say how proud I am of all we've done together over the past year. We've faced so many challenges during this global pandemic and still, with your help, we've managed to raise over $25,000.00 for LBD research and grown exponentially. I am constantly proud of and grateful towards this amazing community and am so excited to be a part of this amazing project.
First and foremost, we're so happy to announce that the annual CLBDI Holiday Fundraiser is still live and has already surpassed our first goal of $1,000.00. We love that we are seeing people sharing, commenting and donating from all over. If you haven't checked it out already, please click this link to learn more and make a donation. If you are unable to donate, please share the fundraiser on your social media feeds and/or email it to your friends and family. The fundraiser will stay open until the end of December so there is still plenty of time to share and donate. Together we can do some good this holiday season.
Also, we wanted to let you know that we have already sold more than half of our limited run of CLBDI shirts and the inventory is getting smaller and smaller every week. If you are interested in securing an order before Christmas or making sure that we have your size, please head over to our Community Page and place an order as soon as possible. We will be sending out another round of shirts at the end of next week.
After the holidays have passed and we have settled into 2022, the next CLBDI event will be a second online art show to raise money for LBD research. This time around, we plan to feature a new collection of artwork from our founder Carol and a selection of pieces from amazing artists from our community and across Canada/North America. We can't wait to share the full lineup but, for now, we're excited to announce that we will also be featuring a small collection of original abstract works from fluid artist Megulatorr Makes all the way from Pennsylvania. It is going to be bigger, better and so much fun.
December's blog post will be a short retrospective on the year and will let you know the total amount that we've raised in our annual CLBDI Holiday Fundraiser and through our merchandise. We'll also be able to update you on the new donation total and tell you more about our plans for the new year once the holidays are over.
We hope you are having a wonderful week and are looking forward to the holiday season.
See you in a month.
Good Afternoon Lewy Warriors!
I hope this finds you well and that you've had a wonderful month. First and foremost, we wanted to thank all the members of our Advisory Board for all their help and input over the past month or two as we've sorted out the merchandise and solidified our plans for the future. We really appreciate all of your advice and input.
We are excited to announce that next week we will be launching our annual Holiday Fundraiser on Gofundme! Last year we raised $1,100.00 thanks to all of your help. This year the fundraiser will run from Nov. 1st until the start of January and we hope to beat our previous total. Please consider donating or sharing the link on your social feeds! Everything helps!
We're also starting to plan our next online, and possibly in person, art show for 2022. This time around we will have pieces available from multiple artists from across Canada and beyond. We had such a great reception to the first show, "Our Emotional Journey With LBD", that we can't wait to do it again!
In other news, you may have seen that we have finally launched our first piece of CLBDI merchandise. Check out a photo below of our spiffy new threads! We wanted to say thanks to Jeff Burton of the Sunnyside Foundation for putting us on to Lena and company at Imprint Anything. They did an amazing job with the shirts. We plan to expand our merchandise onwards in the coming months to offer more styles and even an online store. Very exciting! You can get a CLBDI shirt of your own by visiting the Community page and placing an order. You'll also be happy to know that $10 from every shirt goes to Dr. Pasternak's LBD research!
Thank you all for an amazing October and we wish you a Happy Halloween! See you next month!
Hello Lewy Warriors!
It's been a month already?! Well, we're happy to say that this month's update is full of wonderful news, so let's get right to it.
Firstly, our liaison at UWO, Ashely Irvine, has taken on a new role and will no longer be working with CLBDI. We wanted to thank her for all her hard work over the past two years. She has been nothing short of wonderful to work with and we wish her the best in her new position. She has been replaced by the wonderful Emily Grass, who will now be our contact at UWO. Her contact information has been added to the site and, as with Ashley, you can reach out to her directly to set up a donation at any time. But, with this change, comes an update to our current donation total system going forward. Our donation updates will now be coming twice a year, instead of quarterly, after this month's total. The first will come in January and the second will be arriving sometime in the summer of 2022.
With that being said, we wanted to let you know that, as of Monday, we are sitting at $23,872.00 in total donations! And here is some even better news... We've heard that another donation was made today that puts us either at or just under our goal of $25,000.00 for the year! Incredible. In the two years since we launched CLBDI, we've managed to come together as a community (through a pandemic, no less) and crush our goals. I am so proud to be a part of this project and want to thank everyone involved... whether you donated, commented, shared a post... anything! Thank you, thank you, thank you.
In other news, the CLBDI Advisory Board's official first meeting is tonight. We're so excited to have their input and advice take a more prominent role in our plans going forward. You can expect them to become more visible around here as we grow. We also love to hear from you... so don't hesitate to reach out via our contact form and let us know what you think.
This brings me to another important announcement... Earlier this month, we welcomed a new member, Natalie Leitzmann, to the Advisory Board. We are so grateful to have her input and 10+ years of experience with LBD with us going forward. We shared this on our Facebook page and made some updates to the "About Us" page on our website a few weeks back but we also know that many people don't use that platform and may have missed the announcement so we've added her story and a little about her below.
"My father immigrated from Germany in 1954. The only family member to come. He was 50 years my senior and I was the last of 3 children. When I was 22, my father began acting unlike himself and there were concerns that perhaps he had had a stroke. After a lengthy time in the psych ward in Grand River, the doctors misdiagnosed him as having a psychotic depression. You can imagine that after having a stint in that ward, my father was none too eager to check himself into Freeport Hospital for proper testing. This began in 2005 and I was unable to have him checked into Freeport until 2009. After about 2 weeks they gave him the diagnosis of LBD. At the entry-level of this disease, my father, Klaus, began acting "weird". Nothing seemed to work properly in his mind and everything was a conspiracy. He was not a "pill popper" and therefore getting him to take medication was very challenging. It was a blessing in the beginning because they attempted to give him antidepressants and as I am sure you are aware, those can do more harm than good in a patient with LBD. After the diagnosis, it was still a challenge to ensure he took his medication as he would remove it from his mouth if I wasn't watching. Ironically, in 2012, my father had a right-sided temporal stroke, survived, and his personality returned. He lived until 2016 (almost 84 years of age) and was quite intact until the end. He would remember conversations we had and often asked me two or three days later about what we had spoken about. He died of aspiration pneumonia. as the muscles had weakened in the end and food easily entered his lungs. I have lots to share about his journey and I would like for others to be more aware of the disease and the early symptoms to avoid the stress and confusion I went through. More empathy and community support are needed and I hope to share my story with others to make them feel less alone."
Again, welcome to the team Natalie. We're so pleased to have you with us.
Lastly, October is going to be a busy month here at CLBDI. We are going to be launching our second annual CLBDI Holiday Fundraiser mid-way through the month and will have merchandise ready and available for you soon. We hit a slight snag with some sponsorship and production issues and that put us behind but we are still aiming to have the pre-order up in the next couple weeks and shirts available by the end of the month.
We hope you've had a wonderful September and are looking forward to the fall as much as we are.
The CLBDI blog is run by Advisory Board member Joseph Daniel.