Ragnar Relay 2013

Kenny,
You are not going to believe the weekend I had.
I drove to the cape.
(No, I did not stop at Chatham Pottery)
although I wanted to.
The traffic was crazy, but it was a beautiful day.
The kids were already running. Imagine?
Running almost 200 miles?
Do you remember when Alexandra
wanted to run in the NYC marathon?
Well, this is what came of that.
This year there were 72 runners and 12 drivers.
Volunteers who drove to Ptown for 4:00AM
(thank you for keeping us sane, Meggie)
Six sets of siblings, maybe more.
Elementary School friends.
High school and College friends.
Tuck School of Business was represented.
Friends of friends.
Flights in from Florida, Chicago, and of course Colorado.
NYC, Boston, Acton,
and the great state of RI were
strongly represented. Australia was there!
And Billy McGuire was represented.
A 22 on the back of their running shirts.
Billy's number. He ran with each one of them.
Not only did they run,
but they worked at raising money for Project ReMind.
The non-profit that Alexandra and Mark
started so that money would go
directly to research Frontotemporal Degeneration.
So other families might someday
not go through what we did.
It's what you always said you wanted...
to help other families.
Mark is working full time,
more than full time to build this company.
You would be so proud.
I have been humbled many times these past few years.
But this weekend slays me.
Kenny, it was amazing.
I wish you were here with us.
I missed you by my side.
But imagine how wonderful
to be part of their accomplishments.
Amazing.

This is the face of FTD

The vans are on their way to the start of the race.

As I type

Team Neon Extreme

72 runners

multiple volunteers

and the hearts and prayers

of so many

working to eventually eradicate

Frontotemporal Degeneration.

The disease that took Kenny, Michelle Brown, Fred Smith and Jim Rowell.

It is stealing the life of George Silva, Howard Glick, and Matthew Matherne.

So many more whose loved ones have touched my life.

Mothers, fathers sisters and brothers.

Please help us reach our goal.

We are so close.

Project ReMind/Neon Extreme 

Miss you

Every day

Thank you to all who have donated.

xo

Cheryl

pve: neon extreme

Today, I am touched by the generosity of a friend I have not yet met. This is just an example of what  the blogging world has done for me. I started A Coastal Point of View very tentatively, not knowing where it would go. I am so grateful for those who have learned a bit about Frontotemporal Degeneration. To see how one family works through a tragedy they never expected. To those who have sent prayers, good thoughts and kind words, thank you. To those who have donated to NEON EXTREME please know that it is going directly to research this horrific disease.
Patricia, your art has always amazed me, but to see this, brings tears to my eyes. Thank you.

Please visit Patricia's Blog and her thoughts on Neon Extreme at pve: neon extreme:

Oh Boston, You're My Home

When I was a little girl

in my life

there was Topsfield and Boston.

My dad had meetings on Saturdays

at his office on 

Summer Street. 

Or was it Franklin?

I am not sure. 

My mom, brother and I would go in to the city with him.

It was always fun.

Those were the days when girls wore dresses.

Boys wore good pants and shoes, not sneakers.

While daddy was at his meeting

we walked through the city.

If we were good,

we went to 

Charle's E Lauriat's Bookstore

on Washington St.

We could pick out a new book. 

It's what we did.

Even the day after JFK was shot.

My mother describes the eeriness 

of shop windows draped in black.

Boston is part of me.

It was part of Kenny.

It was part of us.

He proposed, and gave me my diamond 

under a tree in the Public Garden. 

Then we had breakfast at The Ritz. 

We brought Alexandra and Graham

each year for a long weekend in the dead of winter. 

In the spring we rode on the Swan Boats.

When I worked in Boston,

the city would shut down on

Marathon Monday.

I lived along the race route

in Brookline

and we would stand on the road

cheering for the runners.

from early in the day

to long into the dark.

It was always impressive.

Heroes

This city is filled

with heroes.

Monday was a punch in the gut.

A familiar scene.

In another city.

This time it was now my city.

City Councilor Matt O'Malley might have said it best.

"We are Strong.

We are Resilient.

We are Boston."

Wednesday Wanderings

We are back in NYC

at

EATALY

A perfect place to meet 

and eat

Delicious food

Delightful friends

Union College in the house

And if you are in NYC this weekend

Neon Extreme NY Fundraiser for Frontotemporal Degeneration

If you can't attend but would like to donate

please DO