2024 Charity Highlight: Association for Frontotemporal Degeneration

Since day 1, giving back to our community has always been a key priority for Mindex. While we usually select one main charity to focus our donation efforts on every year, we’ve committed to supporting three charities in 2024 as part of our 30-year milestone— 3 charities to celebrate 30 years! #3for30

The 2024 Selected Charities include:

1. The Association for Frontotemporal Degeneration. Improving the quality of life of people affected by FTD and driving research to a cure.
   
   
2. Junior League of Rochester. Advancing women’s leadership for meaningful community impact through volunteer action, collaboration, and training.
   
   
3. Ronald McDonald House Charities. Caring for families with children who are ill or injured, so no family has to deal with their child’s medical crisis alone.
   

Over the next couple of weeks, we’ll be sharing more information about how each of these amazing organizations is making a significant impact in their respective areas and within the lives of the Mindex employees who nominated them.  

Our first featured story is with Kelsey Kolar, SchoolTool Training Manager, who nominated the Association for Frontotemporal Degeneration in memory of her cousin, Billy.

Q: Can you shine a bit more light on the charity’s purpose? 

Kelsey: When people hear the word “Dementia” they often think of Alzheimer’s and about the older population, but frontotemporal degeneration (FTD) is the most common form of young-onset dementia that impacts people under age 60. We experienced firsthand seeing the health of my 28-year-old cousin, Billy, decline in a horrific way. Within two years, we saw a young, athletic, going-to-take-over-the-family-business individual decline to the point where he had no cognitive function.  

The Association for Frontotemporal Degeneration helps raise money to support research for a cure and really just get information out there because it’s not a very well-known disease and is often misdiagnosed. It takes an average of 3.6 years for someone to get a diagnosis because there isn’t enough known about it and it isn’t typically screened for. Billy had been misdiagnosed multiple times prior… Was he bi-polar? Was it CTE from playing football? We were thinking of all kinds of things we had known of, but this was something we never knew existed. We didn’t know dementia could impact someone of such a young, healthy age.  

It’s alarming and striking to see these symptoms affecting the younger population who are at the highlight of their career, building a family, and more. This is personal to me, but with anything that affects the cognitive nature of the brain it’s very disheartening to witness.  You want to make sure people are as comfortable as possible; the people not only affected by it, but as well as their families who are watching their loved one slowly pass away from this horrible disease. 

We’ve got our fingers crossed that someday there will be a cure.

Q: Do you have a personal story or experience you can share that has inspired your support for this charity?

Kelsey: The Association for Frontotemporal Degeneration is well established, so once Billy was diagnosed, we were able to rely on them for information about the disease, timelines, symptoms, stories, outreach and more.  Having that was very helpful.  

Additionally, using the knowledge the Association provided, my family was able to continue to help people impacted by the disease through additional fundraisers and efforts within the local Rochester community. For example, once Billy was diagnosed, he needed 24/7 care and was in an assisted living facility called The Homestead at Soldiers & Sailors Memorial Hospital. Due to knowing what kind of care he needed, they were able to help raise money for the Finger Lakes Health Foundation and have a multi-sensory room built at that facility so other people coming in with dementia would have a safe, comforting place to go.  Billy lived there right up until he passed away, and they’ve since continued revamping additional areas at the Homestead.  

Q: Are there specific programs or initiatives the charity has that allows people to get involved?

Kelsey: They have different fundraising opportunities throughout the year:

• The one that my family participated in was Food for Thought which takes place in the fall and brings people together through food and drink.  This took place at Abandon Brewing Company, which Billy's family owns.
  
• In February, there is With Love that is a way to host an event online. That takes away the need to have a physical place to host, making it easier to gather people in a virtual setting.
  
• They also have walking and running races year-round.

People can do things independently or through their business.  It’s one of those foundations where you can just reach out and they’ll work with you to set up what you’d like to do. They are very active in helping get fundraisers organized.

Q: Is there anything else you’d like to share about this charity or your experience that you haven’t yet said?

Kelsey: With Alzheimer’s, you lose your memories.  With FTD, you lose memories and your cognitive function—the basis of who you are. It's devastating.

Both Bruce Willis and Wendy Williams have been diagnosed, so the public’s awareness about FTD is increasing, but it is so uncommon it’s just something you would never think would impact you or your family. It’s easy to think, “It’s rare, it probably isn’t that”,  but it could be.  It is a brutal thing to witness, and we need to help this become more of a common thing to consider and screen for. 

It will negatively impact your family whether your ready for it or not. I hope they find a cure, but for now we just need to keep talking about it.

Inspired by Kelsey's story and want to donate to this charity's cause or want to learn more?

Visit The Association for Frontotemporal Degeneration (FTD) website for more information.