Running Update:

10/29/2017	Run		5.0 mi	48:47
11/1/2017	Run		5.0 mi	48:56
11/3/2017	Run		5.0 mi	48:54
11/4/2017	Swim		2000.0 m
11/5/2017	Run		9.1 mi	1:31:33
11/6/2017	Run		2.0 mi	17:00
11/7/2017	Swim		1200.0 m
11/8/2017	Run		5.0 mi	49:04
11/11/2017	Swim		2100.0 m
11/12/2017	Run		10.0 mi	1:40:42
11/14/2017	Swim		2100.0 m
11/15/2017	Run		5.0 mi	50:43
11/17/2017	Run		5.0 mi	49:30
11/18/2017	Swim		1700.0 m
11/19/2017	Run		9.1 mi	1:33:11
11/21/2017	Swim		2000.0 m
11/23/2017	Run		5.0 mi	42:11
11/25/2017	Swim		2000.0 m
11/26/2017	Run		13.2 mi	2:17:22

Happy Thanksgiving, everyone!  We had a lovely holiday at home, sharing it as we usually do first with our dear friends, Neil and Marcia, then with my Mom and Aunt Anne.  On Thanksgiving morning, it is our tradition to attend the Madison Turkey Trot—it was our ninth year in a row!

Neil and I have run four half and NINE full marathons together. As a result, we own many of the same race shirts.  When Neil showed up for the Turkey Trot dressed in his Hartford Marathon and NYC Half shirts, I had to copy him :)

The Constable Family

Photo op before the race

Neil and Marcia

Todd trying on Helen's hood

At the start

With Jane after the race

Another sign that the holidays are here—this weekend I hit 1000 miles of running for the year.  It sounds crazy, but I’ve run 1000 miles per year for the last five years.  Here’s hoping for another five.

NF Update:

For several years, the Tuesday after Thanksgiving has been called #GivingTuesday, a day for charitable giving.  If you are looking for a worthy cause to which to contribute, look no further than the Children’sTumor Foundation!  You can give right here, through my website:  

www.KRath4Jane.com

More photos from the Children's Tumor Foundation New York Gala 2017

(Courtesy of CTF.  For all the photos from the gala, click here.)

The Constables on the red carpet

Showing our bidding paddles

Auctioneer Christopher Aslanian welcoming Phillip and Jane to the stage

Gabrielle Pegg sings

All the NF Heroes onstage

Master of Ceremonies Raina Seitel of NBC

Dancing to the Grand Finale

Dr Annette Bakker feeling the music!

The Children’s Tumor Foundation New York Gala 2017

The New York Gala is one of the Children’s Tumor Foundation’s largest fundraisers of the year, with more than 300 guests in attendance.  This prestigious event is a gathering of friends and supporters, whose participation helps to continue funding the programs responsible for the progress we are seeing today.  This year, our family was invited to attend so that Jane could speak about her success on her clinical trial with the MEK inhibitor, selumetinib!

The Constable Family, all dressed up :)

Jane with her bidding paddle

Raising funds to fight NF!

We have a winner!

One of the highlights of the evening for me was finally meeting the Moss Family.  Phillip Moss is 12 years old and has the same type of NF tumor in the same location as Jane, and he is participating in the same clinical trial as Jane!  Phillip’s mom, Renie, and I have corresponded over the last several years and have even spoken on the phone a few times, but we’d never met in person!

Renie and me

Phillip showing Jane how to put a glow stick into her balloon

Success!

We also got to meet Gabrielle, a 10th grader from Long Island who also has NF, and has the voice of an angel.  She entertained us with two songs that evening, including “Perfect” by P!nk (the lyrics of which were “perfect” for the event, in my opinion: “Pretty, pretty please, don't you ever, ever feel like you are less than, less than perfect…”)

Our Helen, Gabrielle, Jane, Phillip, Helen (Moss), and Alec

During the event, Frankie and Olyviah Moriguchi were honored as the 2018 Children’s Tumor Foundation Ambassadors, an award bestowed upon young adults living with NF to recognize their courage living with the disorder, and their personal efforts to further the Foundation goals of research, public awareness and patient support.

The Moriguchi's story:

“Frankie’s family was once told he’d never walk, talk, or even make it to his teen years.  He just turned 22 and, despite all of the pain and discomfort, has a happy disposition and is an absolute joy to be around.  As a baby, it was discovered that Frankie had a tumor on his optic nerve that grew to erode part of his skull, which led to the removal of his eye. In 2016, Frankie had surgery to remove all the remaining eye systems, including tear ducts, his eyelids and eye lashes. He can now comfortably fit glasses on his face and no longer suffers from ongoing infections. Frankie also experiences developmental delays as a result of all of the complications from NF.

Unlike her older brother, Olyviah is less noticeably affected by NF. She has multiple café au lait spots and has had several surgeries to remove painful tumors.  She also has ADHD and receives accommodations at school due to learning disabilities resulting from NF; nonetheless, she is determined not to let NF prevent her from achieving her goal of traveling the world. Olyiviah speaks Japanese and dreams of visiting Japan.”

The best moment of the night was the speech by Jane and Phillip <3

I was one proud Mama!

~~~

We spent the next day being tourists, visiting the Statue of Liberty, despite the biting wind and cold.

With the old torch

A full sized model of the statue's face

And foot!

The sign next to this display said "Please do not stand on the foot."

The New Colossus by Emma Lazarus <3

City girl

A view from the pedestal.  Brrr.

So windy!  Trying to get Helen to huddle with us.

Family photo op

Taking a rest

On the ferry ride back to New York

Approaching the Battery

~~~

On a different note, on Friday the Childhood Tumour Trust released a short, animated, highly informative video explaining neurofibromatosis in simple terms.  It’s less than 4 minutes, but answers most basic questions that people have about NF.  Enjoy!  Here's the link: What is Neurofibromatosis?