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,
The CLBDI blog is run by Advisory Board member Joseph Daniel.