At the request of the Sparks family, we accessed the story on CNN this morning, which is intended to increase awareness of Frontotemporal Dementia (the article and corresponding video can be found here).

We are very thankful that Kenny and Cheryl attended our wedding to share such a very important time with us. It meant the world. Our hearts go out to Kenny and his family - please know you have our love and support. Here is Alexandra's (Kenny's daughter) letter:

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Dear Friends,

My family will be featured in a short piece on CNN next week and I wanted to let everyone know about it and explain why. This is something very personal, but very important for me to share because we are trying to raise awareness of a disease that has impacted our lives and the lives of many others.

As many of you know, my dad suffers from a disease called Frontotemporal Dementia (FTD). He was diagnosed four years ago, when I was a sophomore in college. FTD is a progressive degenerative brain disease, which affects behavior, speech, memory and motor skills and is most commonly diagnosed at a relatively young age. FTD represents an estimated 10-20% of all dementia cases and is recognized as the most common dementia affecting the younger population.

Unfortunately medical professionals know very little about FTD. There is no cure and there are currently no treatments to slow or stop the progression. When my dad was diagnosed, his physician told our family that there was nothing anyone could do and suggested that we enjoy the time that we had left with him.

To watch my father deteriorate in all functions of his life, most importantly communication has been the largest hurdle when dealing with FTD. However, the lack of knowledge unveils additional obstacles. There is a limited amount of funding for research and this is partly because most people don’t know that FTD exists. If there is no awareness and no research then there is no hope for a cure.

A couple of months ago, my family was given the chance to help what feels like a hopeless situation. CNN approached us to talk a little bit about what it is like to live with FTD in a special on the disease. We agreed, in hopes of spreading awareness.

This coming Monday, December 14^th, the piece will be featured all day on CNN.com starting at 9 am. That same day, it will also air during the CNN morning show, American Morning, between 7-9 am. In addition, short clips from the piece will run throughout the day on CNN (Please note: all of this is subject to "breaking news"). If you have time, please watch or DVR it. My family and I have not and will not see it before it airs, so we don’t know what to expect. Please, help me spread awareness. If all of you tell at least one of your close family members or friends, then we are that much stronger in the fight against FTD.

Thank you for understanding and supporting me in this personal and important matter.


Alex

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