I want you to join me in some behavior that’s well ... a little off.

Why? Because I want you to know about Frontotemporal degeneration or FTD and help me spread the word.

FTD is a form of dementia that typically affects younger people. Both my sisters had it in their 40s and early 50s. It’s different than Alzheimer’s, which most people know about. FTD affects your behavior, language or movement but your memory is usually fine. It’s a progressive disease with ongoing damage to your frontal and temporal lobes (think social filter, behavior, language). For some there’s also a genetic connection to ALS. My sisters as well as my dad also had ALS. They all had the same birthday of December 16. Hence #team12-16

FTD is difficult to diagnose because not many people know about it and it’s easily mistaken for other diseases and behavioral issues. The behavior and communication changes in my sisters were quite odd but I never could have imagined that they were experiencing dementia. My sisters had some incredible support from their spouses, family, friends and even people who never met them. If you knew my sisters, they were pretty amazing and full of love.

One of the greatest allies of people with FTD is the Association for Frontotemporal Degeneration or AFTD. They do amazing work supporting FTD patients and their caregivers and family. They’re also looking for a cure. FTD is a scarry, strange, frustrating illness. The AFTD’s mission is vital in helping people face this illness.

The AFTD needs our help to spread the world about FTD. Join #team12-16 and take the #FTDhotshotchallenge. Post a video of you taking a hot shot, challenge some friends, and donate to the AFTD. You can do it from this page.

I look forward to seeing some fun videos. Let’s #torchFTD. 

jim