Coast to Cure NF - Finding My Voice Through Running
As a runner and especially an ultra distance runner, you are constantly asked "Why?" Sometimes it is a direct question. Other times it is indirect, such as "Are your crazy?" or "I don't even like to drive that far."
Running gives me fitness, the ability to deal with stress, and the feeling of accomplishment. In addition to simply loving to run, it also gives me a platform to talk about the things most important to me. Amy and I have both been fairly involved in fundraising through endurance sports since we entered the realm, but Nat's diagnosis has brought us focus and 2017 has allowed us to take it to an entirely new level.
Back in July, I ran the Pemigewasset (Pemi) loop up in the White Mountains while wearing my NF singlet. During the run I stopped multiple times to explain to people what Neurofibromatosis is, not thinking too much of it. A week latter while telling the Pemi loop story to NF Northeast Director Karen Peluso at a pizza party, she told me that I have found my role and how key raising awareness is to curing this disorder. It was at this moment when I really understood what a powerful platform that my running has provided me.
At the time of writing this, I have numerous friends on Facebook, followers on Instragram, and connections on Strava, and a majority of them all know what Neurofibromatosis is now. While I know this is not enough, it is a start, and I am going to continue to do "Crazy" things to get my message across and hopefully someday we will be able to stop the affects of this disorder.
Coast to Cure NF Recap
Last summer while training for a 100k we came across the Coast 2 Cure NF Charity bike ride. Fairly new to the community, we were eager to jump in and get started. I saw the 24 mile option and decided it would be a perfect training run.
Jump head to 2017 (after completing the 24 mile option and a 100k last fall), we had to raise the bar. I decided I would tackle the 66 mile option (really ended up being 67.3) as a training run for my 100 miler I will be tackling at the beginning of October.
So we got to work.
It is totally surreal running that early. Most of the roads were well lit, but every once in a while you would hit one that was totally black (luckily Keith was smart enough to bring a head lamp). Around mile 8 as we passed through the center of Manchester, I pointed out the Dunkin Donuts I had stopped at during my birthday run. Not a soul was awake in the little town.
Beginning at 4:30 and continuing through the day my watch beeped with words of support; from "You got this", to "Stay Strong", to "You are an Inspiration". It all helped.
Around mile 25 the sun finally camp up and a few miles later my sister in law, Meryl met us for
breakfast. Huge shout out to Keith and Patrick who kept me going for the first 30 miles and Meryl for bringing breakfast, driving them back, and then going on to bike the 24 herself. There were no words I could possibly ever say to express my thanks for this. It really did make all of the difference.
The next 18 miles I spent with myself. For me, running really is a form of meditation and it gives me time to work things out; stress, logistics, work, and even problem solving. You can ask my co-workers; I often come back from a lunch run and am like, "I figured it out."
The majority of these miles were on scenic back roads of Boxford and Georgetown along state parks and ponds. As a few runners came the other way and said "Good Morning" I smiled back, thinking I am already over 5 hours and 36 miles in.
I reached one of the official aid stations (Mile 47) in the center of Rowley, MA. This was also where my friend Mike (yet another ultra runner) was joining for the final 19 miles. As the stop came into view, I got a huge surge of adrenaline. After a quick bite to eat and some pictures with the volunteers, we were off.
Unfortunately, a few miles later I began to fade. Luckily for me, Mike was right there saying "I bet you are too low on calories" and we were able to rectify the problem quickly with a Gu and a Cliff Bar (about 340 calories total). A few minutes later I was able to get back into a groove and sailed right into the final aid station (Mile 58).
After more food and some fun chatting with the volunteers we were off. The bikes finally started catching us and it was great to see how many of them were out there. It gave me the desire that I needed to fight through and the ability to hang on.
As my watch beeped for the 62nd mile, I smiled and told Mike we are now in unexplored territory. If I am going to be able to complete a 100 mile race, then I could not let this break me. We were back on Route 133 heading east, directly at the water on rolling terrain. Each uphill seemed to last forever, but each downhill brought relief.
With 2 miles to go, Amy and Laura biked by shouting for me (I would later find out they were hammering to make sure they finished on bikes before me) and then shortly thereafter my parents passed by. I had gotten a hold of the final pull of the finish and I picked the pace up as I closed in.
As I came up the final hill into the finish there was a huge crowd yelling. There was no official finish line as this was not a race, which in some ways was perfect. While the run was a success, the fight is still not over. There are still tons of people affected by Neurofibromatosis that need our help and I will continue to use running to strengthen my voice to make sure they can get it.
A few minutes later (and after a powerade and water -- thanks Diana), I migrated to a table and was given a victory beer. After chatting with bunches of people we have met in the community in the last year and some new ones, we made our way home.
Huge thank you to all of our friends and family; From Keith, Patrick, and Mike for running with me, Meryl for breakfast / transport / biking, Amy, Laura, Becca for biking, my in laws Betsy and Dan for watching the kids, my parents, Susan and Gary, for coming up to see us finish, the Coast to Cure NF Committee and NF Northeast for putting on such an awesome event, and all of you who have contributed through donations and / or words of support. We truly appreciate it.
Nat
You may think the highlight of my last week was completing this run, but you are wrong. Nat had his semi-annual checkout with his neurologist last week and was given a clean bill of health. While his future with NF is still uncertain, you take it one appointment at a time, and celebrate good news every time it is given.
Next Up
- Hennepin 100, my first hundred, in just over 25 days.
What I have really learned is that when people say "You are crazy" they are really saying "This is awesome." Ultrarunning truly is a team effort.
- Scot
Running gives me fitness, the ability to deal with stress, and the feeling of accomplishment. In addition to simply loving to run, it also gives me a platform to talk about the things most important to me. Amy and I have both been fairly involved in fundraising through endurance sports since we entered the realm, but Nat's diagnosis has brought us focus and 2017 has allowed us to take it to an entirely new level.
Back in July, I ran the Pemigewasset (Pemi) loop up in the White Mountains while wearing my NF singlet. During the run I stopped multiple times to explain to people what Neurofibromatosis is, not thinking too much of it. A week latter while telling the Pemi loop story to NF Northeast Director Karen Peluso at a pizza party, she told me that I have found my role and how key raising awareness is to curing this disorder. It was at this moment when I really understood what a powerful platform that my running has provided me.
At the time of writing this, I have numerous friends on Facebook, followers on Instragram, and connections on Strava, and a majority of them all know what Neurofibromatosis is now. While I know this is not enough, it is a start, and I am going to continue to do "Crazy" things to get my message across and hopefully someday we will be able to stop the affects of this disorder.
Coast to Cure NF Recap
 |
| Stage Fort Park 1:59AM, 9/9/17 |
Jump head to 2017 (after completing the 24 mile option and a 100k last fall), we had to raise the bar. I decided I would tackle the 66 mile option (really ended up being 67.3) as a training run for my 100 miler I will be tackling at the beginning of October.
So we got to work.
- Come up with a plan
- Find people to drive me up / run with
- Convince others to do the ride
- Fundraise
It is totally surreal running that early. Most of the roads were well lit, but every once in a while you would hit one that was totally black (luckily Keith was smart enough to bring a head lamp). Around mile 8 as we passed through the center of Manchester, I pointed out the Dunkin Donuts I had stopped at during my birthday run. Not a soul was awake in the little town.
 |
| 30 miles in with Patrick and Keith |
Around mile 25 the sun finally camp up and a few miles later my sister in law, Meryl met us for
breakfast. Huge shout out to Keith and Patrick who kept me going for the first 30 miles and Meryl for bringing breakfast, driving them back, and then going on to bike the 24 herself. There were no words I could possibly ever say to express my thanks for this. It really did make all of the difference.
The next 18 miles I spent with myself. For me, running really is a form of meditation and it gives me time to work things out; stress, logistics, work, and even problem solving. You can ask my co-workers; I often come back from a lunch run and am like, "I figured it out."
The majority of these miles were on scenic back roads of Boxford and Georgetown along state parks and ponds. As a few runners came the other way and said "Good Morning" I smiled back, thinking I am already over 5 hours and 36 miles in.
I reached one of the official aid stations (Mile 47) in the center of Rowley, MA. This was also where my friend Mike (yet another ultra runner) was joining for the final 19 miles. As the stop came into view, I got a huge surge of adrenaline. After a quick bite to eat and some pictures with the volunteers, we were off.
Unfortunately, a few miles later I began to fade. Luckily for me, Mike was right there saying "I bet you are too low on calories" and we were able to rectify the problem quickly with a Gu and a Cliff Bar (about 340 calories total). A few minutes later I was able to get back into a groove and sailed right into the final aid station (Mile 58).
After more food and some fun chatting with the volunteers we were off. The bikes finally started catching us and it was great to see how many of them were out there. It gave me the desire that I needed to fight through and the ability to hang on.
 |
| Mike joins mile 47 |
With 2 miles to go, Amy and Laura biked by shouting for me (I would later find out they were hammering to make sure they finished on bikes before me) and then shortly thereafter my parents passed by. I had gotten a hold of the final pull of the finish and I picked the pace up as I closed in.
As I came up the final hill into the finish there was a huge crowd yelling. There was no official finish line as this was not a race, which in some ways was perfect. While the run was a success, the fight is still not over. There are still tons of people affected by Neurofibromatosis that need our help and I will continue to use running to strengthen my voice to make sure they can get it.
A few minutes later (and after a powerade and water -- thanks Diana), I migrated to a table and was given a victory beer. After chatting with bunches of people we have met in the community in the last year and some new ones, we made our way home.
 |
| This finish with Nat |
Nat
You may think the highlight of my last week was completing this run, but you are wrong. Nat had his semi-annual checkout with his neurologist last week and was given a clean bill of health. While his future with NF is still uncertain, you take it one appointment at a time, and celebrate good news every time it is given.
Next Up
- Hennepin 100, my first hundred, in just over 25 days.
What I have really learned is that when people say "You are crazy" they are really saying "This is awesome." Ultrarunning truly is a team effort.
- Scot
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