Family Spotlight: Dan Growden’s 15/1965 Bike Ride

My name is Dan Growden and I'm father to 5-year-old Sawyer Grace who lives with AS. If I'm honest, my idea for a challenge that pushes me mentally and physically came pretty quickly. I call it the 15/1965 Bike Ride. The number 15 signifies the chromosome that AS affects, and 1965 is the year that AS was first documented by Dr. Harry Angelman. I’ll be riding a total of 1965km in 15 days which equals 131km a day. In a way it is very similar to another challenge I do called “Embrace the Suck”. In February myself and a few others do the same workout every day for the month of February. The idea and creator of it is Stu Macmillan, Co-founder and CEO of Altis and widely considered as one of the best coaches of speed/power athletes on the planet. The goal of Embrace the Suck is to reduce the time between intention and action to make the process a little less sucky. In many ways it relates to the life of a parent/caregiver of someone living with AS. None of us had hoped or planned on taking our kids to endless physiotherapy, neurology, occupational therapy, nutritionist, sleep specialists appointments. To have them struggle daily with, crawling, walking, communicating with us and others, sleeping, seizures. We try to be strong for them and most of the time it sucks. We lose track of days, weeks, when their next appointment is, we stress about their every move, when the next seizure will happen, how long is the current medication going to work. Now I know it's not all doom and gloom, they also bring us a tremendous amount of joy, compassion, perspective, but all the struggles we watch them go through just plain sucks. With that being said I know that the anticipation of the 5+ hours on the bike each day, the total volume of time on the bike, the drain from said volume and regular life commitments are going to take its toll. My idea is to lean into this and embrace it for what it is and try to reduce the time between intention and action and get on with it. 

My goals for the challenge are to raise money and awareness for FAST, and to show people how close we are to finding a cure for everyone living with AS. That their dollars can help get us more shots on goal and that it will make a difference for not only people living with AS but others living with rare diseases as well.

Another goal is to inspire parents/caregivers to lean into whatever their discomfort may be and to take small steps to make their days a bit better. It can be as simple as calling the pizza shop and talking to an actual human to order the pizza. This is something we used to fight over as kids as we were all too scared to do it. But then you realize it's easy and actually nice to speak to someone else.

Anyways, throughout the challenge I will be providing facts about AS, updates about the ride, and real commentary about daily life and sleep, or lack thereof with Sawyer. I won’t sugar coat it as most of us do, such as “Oh it's fine” or  “I feel great”. I’ll tell the truth, whether I've had 2hrs of sleep or 6hrs. I hope you join along for the ride. (yes that was intentional). Please pass it along to anyone you think might enjoy it.