September Update

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 She has been replaced by the wonderful Emily Grass, who will now be our contact at UWO.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.

"After a long standing legal career, I am now in the field of nutrition and wellness and aim to heal through food and own my own company, The Bold Visionary, with my business partner. In 2020, I was diagnosed with Multiple Sclerosis and Lyme Disease and have successfully treated both ailments naturally through diet and exercise. I believe that many of our diseases stem from a poor diet including Alzheimer’s and Dementia. I have taken courses through Apollo Health on cognitive decline that indicate that early warnings of dementia can be reversed through diet, exercise and proper sleep.

​I was a young 22 year old when I was first introduced to LBD and have written and studied for many papers through my university career. As an advocate for my father for his 12+ year journey with LBD, I have first hand experience with doctors and was on my way to medical school when my own diagnosis hit. I decided that I wanted to get to the root causes of the diseases rather than labelling and putting a "band-aid" on them. I firmly believe that we can help others suffering from these debilitating diseases."

"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.
​
Best,
Joe