There it is ... the big announcement. Did you miss it. Okay, one more time:
201 Days to Ironman Lake Placid
I've decided to fund raise for the Chirldren's Craniofacial Association as a part of my journey to Ironman Lake Placid. Ta-dah.
Maybe it's not so big. People raise money for causes all the time. Yes, yes it's true but not me and not ever tied to my racing. I have always kept these two things separate. I do good things and separately I race marathons and triathlons.
How did this happen - How did I learn about the Childrens Craniofacial Association?
Here's why and how it came about. I'm 41. A zillion years ago when Facebook came around it was great fun for us old-timers because those of us who had moved far and wide across the world reconnected. It was especially fun to reconnect with my college girlfriends with whom I had lost contact. Over the years we've been able to share the miracles of becoming mothers and raising families. Through Facebook I reconnected with my college sorority sister Erin.
One of her children, named Eli was born with a genetic abnormality named Apert Syndrome. She has been very open with her story of raising Eli over the years. Since I also have children around the same age it has been very touching to me.
Last year, while training for Ironman Chattanooga three members of my team had registered for the event through Team Challenge which included a fundraising commitment to benefit Crohns and Colitis Foundation of America. It was a lot of effort for them to meet their fundraising minimum and so the whole team helped. You may remember me harassing people on the blog and Facebook. While I was hounding my friends for virtual run registrations I was also reading about Erin and Eli going through a rough time recovering from a surgery. She is open about her challenges and it was an emotional time for anyone who knew them. I had moments of guilt because I was working hard on a cause for my friends at the same time somebody I knew was actually at that moment directly in need. So I think the seed was planted in my mind. And like a lot of seeds it slowly grew.
A few months ago I asked Erin if I could fund raise for her cause. She never asks for anything my friend Erin so this was all my idea. She said yes and pointed me to the Children's Craniofacial Association. And we were off.
|This was the sunrise on my way to my New Years Day run on South Beach. No I shouldn't take pictures while driving on the highway. And no the photo doesn't do it justice.|
Why the Children's Cranialfacial Association? and Why you? and Why now for Ironman Lake Placid?
Why Children's Craniofacial Association? I asked my friend who she would want me to raise money for as I was inspired by her and her family. She directed me to CCA. Also, because I had never heard of Apert Syndrome. I think that rare conditions benefit from both exposure and money. The more exposure they get of course the more money to help those affected the more people can be helped.
I had to come in and edit this after the fact because in the first round of this post I had made a mistake. There is no cure for Aperts Syndrome. It's a genetic mutation that can happen to anybody. What the CCA does is work in education and outreach, offering tools to assist those who have just received a diagnosis, those who are transitioning to school, and even adults with Craniofacial abnormalities. They host a retreat every summer for children and adults with Craniofacial conditions and their families. There are seminars but mostly it's a chance to just come together and be "ok" for a few days. And CCA also offers financial support for those who need it when traveling to see specialists.
Why me? Well ... if not me then who? So there you have it. It's me then.
Why now? Because why not now. It felt like as good a time as any. I'm going to race Ironman Lake Placid - the training will be a long journey. There is a pretty natural tie in between ultra endurance events and other tough battles like parenting a child with Apert Syndrome, I think.
All parents share a similar journey and at the same time every parent walks the road alone. When I read about Eli and Erin and their challenges I am touched to the core of my soul as a parent about the similarities of our lives and also the striking differences.
Raising Awareness and Money
Over the next seven months I hope to tell a bit of Eli's story. If you're interested you'll learn a bit about this syndrome. Plus of course I hope to raise some money. Fundraising is hard and I'm not going to be shy about it but I also am hoping not to annoy everyone at every turn by harassing them for money so let me know if I cross the line.
How to Give
I set up a fundraising site through I Tri for Good to accept donations. I chose this method because they tell me that Every Penny that is put into this account will be given to the Children's Craniofacial Association. I set it up - people donate - after the event they cut a check. Seems like a win win to me.
So if you'd like donate here.
The link if you're curious is https://itriforgood.org/athlete-profile/amysaysso/
In 2014 my totals were:
Run: 1058 miles or 216 hours
Bike 1785 miles or 156 hours (trainer miles are only in hours so it's a mismatch but whatever)
Swim 191,995 yards or 84 hours
Brick (no idea why these hours were recorded this way 56 miles or 6 hours
To compare and contrast with 2013
Run 688 miles
Bike 1407 or 141 hours (again mismatch with the trainer hours)
Brick 57 miles
Thanks for reading.