About my Fundraiser
Our father always said the happiest times of his life were when he was running. He ran two marathons, more Road Runner races than we could recall and any local races he came across. Of all the reasons he had told us why he loved running, winning the race was never one of them. He ran to be in the company of friends. Later he ran to bond with his son. He ran to push his own limits, to challenge himself physically and mentally. To not be idle. To feel alive.
At the age of 62 however, he entered a race he had not anticipated. He was diagnosed with Frontotemporal Degeneration (FTD), a progressive neurological disease, which shares many similarities to Alzheimer's, while encompassing many other aspects that make it unique. One of the most devastating aspects of FTD is that when it strikes, it often strikes young. The average age is within the 50s or 60s but it is not unknown to hit as young as 30. Like Alzheimer's, the destruction of the brain is progressive, terminal and there is no cure at this time. The average lifespan is 7-8 years from the onset of symptoms, but for some it is as short as two.
We are estimating that our dad is about 5 years in. He now lives in an assisted living facility and is completely dependent on others for every daily activity. For those who knew him before his diagnosis, he is almost completely unrecognizable from his former self. So very unfortunately for our dad, this does not seem like a race he will win. But luckily, winning the race was never his goal.
When our father learned of his diagnosis and the finality that it presented, we asked how it made him feel. He thought about the question for a moment and then replied, “You never know what cards you will be dealt, and so you just need to make the best with what you got.”
Although there are currently no treatments or cure for FTD, exciting research efforts are expanding as well as the awareness of the disease. The hope and real possibility is that in a few years there will be several breakthroughs in treatments for people like our dad. Although it may be too late for him, there are thousands of families around the world who would have a chance of actually beating this horrible disease. The Association for Frontotemporal Degeneration (AFTD) is at the center of promoting research into FTD and driving it forward. To aid them in this mission, and to honor our father and his former passion, we are taking part in the Manasquan Turkey Trot on November 23rd, a cherished New Jersey tradition that he would run each Thanksgiving. Although his running days may be behind him, he will walk the 1 mile race with his family at his side. Although we know this might be his “last race,” it will certainly be a joyous day for him, a cherished memory for his family and an opportunity to bring some needed attention to this disease and funds for the organization aimed at beating it.
So please consider making a donation to the AFTD to help them continue the remarkable work they are doing. We greatly appreciate your generosity and any support you can provide. And most of all, thank you for helping us honor our dad, who we are so deeply proud of.