Holiday 2024

Running Update:

2024 mileage to date:

Running              976.5 mi

Swimming          72.3 mi

Not quite a thousand miles of running this year, but if you add the running and the swimming I top 1K miles :)  Plus, I’m still averaging 1000 miles a year for the past 12 years.  I might add a handful more miles before we head to Canada before New Year’s Eve, but for the most part 2024 is a wrap.  In January I’ll start training again for my spring races.

Our 2025 events so far:

    New York City Half Marathon—Sunday, March 16

    London Marathon (!)—Sunday, April 27

    New Haven Road Race Half Marathon—Monday, September 1

It’s never too late (or too early!) to donate to our fundraising campaign for the Children’s Tumor Foundation:

www.KRath4Jane.com

 

 

Jane and Family Update:

Season’s Greetings from the Constable Family!  We wish you all a peaceful holiday and a joyful 2025.

My last post of the year is in honor of our nephew, Bobby, an engineer in the Canadian Armed Forces who lost his life last month.  He was a kind, gentle soul who always wore a smile and was welcoming to everyone.  He was taken from us too soon <3

Blog Update, October: NIH, a new film, and a throwback video

Jane's jack-o'-lantern this year

NIH Update:

Jane and I had a relatively uneventful 6-month check-up at NIH last month. 

Our very full schedule

At this visit, Jane had all her regular testing and MRI of her facial tumor, but also her annual full-body MRI.  (Over 90 straight minutes in the scanner, literally bound in receiver coils from head to toe.  Rock Star.)

I am happy to report that Jane’s tumor remains stable and all her testing was normal.  Our Pediatric Oncology team again talked about the possibility of weaning off of selumetinib in the next few years.  There’s still not a lot of information, but it appears that some plexiform neurofibromas stop growing on their own in early adulthood, so in those cases selumetinib is no longer needed.  The trick is figuring out which ones will stop on their own, and which won’t.  We’re hoping there’ll be a bit more data by the time we have to make this decision.

NF Update:

This fall saw the release of the film A Different Man, a black comedy/psychological thriller starring Sebastian Stan (probably best known for playing Winter Soldier in the Marvel Cinematic Universe) and Adam Pearson.  Adam Pearson is a British actor with neurofibromatosis.  (I wrote about him once before in this blog.)

A Different Man tells the fictional story of Edward (played by Sebastian Stan), a man with a significant facial difference.  After Edward undergoes an experimental drug trial that “heals” his face, the film follows Edward’s experiences with his new appearance. However, he soon becomes fixated on an actor, also with a facial difference, in a stage production based on his former life. Adam Pearson plays Oswald, this stage actor.  The story that touches on themes of identity, self-perception, and physical appearance.

The film has gotten many positive reviews, including from the New York Times, calling it “deft and clever”:  “Sebastian Stan and Adam Pearson star in a marvelously inventive dark comedy about a man who can’t change his insides.” 

People magazine recently featured Pearson in an article about his life and experiences.  Like many of us, he wants the film industry to do better at telling stories about disability.  “I don’t think there are enough disabled voices feeding into the creative process. I get frustrated when people pretend they can’t find them. Granted you don’t have to, but then don’t be surprised when what you make is garbage.”

He also hopes to help normalize facial difference.  "If what I’m doing now means that younger Adam Pearsons don’t have to walk through hell in school, or that someone who looks like me can walk into a pub and it isn't a big deal, then I've accomplished my goal."

I found his most affecting comment was, “My brother and I were raised to live the life we’ve got and not mourn the one we don’t have.” <3

Because A Different Man is prominent film involving NF, the Children’s Tumor Foundation posted a guide to viewing it.  “The NF community may be wondering if they should see the film. While we’re not film critics, we feel it’s our responsibility to provide the facts and caution viewers, especially given its R rating and disturbing content. It’s been described as a dark comedy, which may not resonate the same way for those with NF. For those who enjoy these kinds of films, it might offer a thought-proving experience.” It goes on to list key facts and considerations about the film’s representation of NF, and about NF in general.  Most important is that there is no “miracle cure” for NF as is portrayed in the movie.

I have not yet seen the film, but plan to.  Mostly, I am simply relieved that the character with facial disfigurement is not the villain—a low bar, granted.  But I hope Adam Pearson gets his wish for Hollywood to do better by the NF community.  And I for one hope the film does well—if only for the opportunity to spread more awareness of NF.

Running Throwback:

Here is a little gem for long-time readers of this blog.  In October 2010, I was about to run my first marathon.  A local TV station learned that I was running for my daughter, and asked me for an interview.  The video was posted online, but about ten years ago the station changed hands, and the link was broken.  I thought the video was lost for good, until a new producer at the station recently dug it out of the archives for me!  Here it is, with three-year-old Jane and family—enjoy!

The 2024 Berlin Marathon

A Travelogue from the 2024 Berlin Marathon
 
Berlin day 1
I flew overnight from JFK Airport in New York to Berlin Brandenburg Airport.  I arrived at my hotel around 10:30am and promptly napped!  After settling in to my room, I headed out to pick up my bib.  I took the U-Bahn (part of Berlin’s metro system) to the expo, which was held at the old airport-turned-event space, Berlin Tempelhof, the center of the Berlin Airlift of 1948–49.

At Tempelhof

 
Berlin day 2
My daughter Helen and her friend Olivia arrived!  They were on their way to visit another friend studying in London, but first spent few days in Berlin to keep me company and cheer me on during the marathon.  We had a full day!  We took the S-Bahn to Berlin Central Station and from there walked to the Reichstag Building, the home of the German Bundestag (parliament).

Helen and Olivia at the Reichstag

Then we walked to the Brandenburg Gate, through the Memorial to the Murdered Jews of Europe, to Potsdamer Platz where we had dinner.  Then I doubled back to the Brandenburg Gate for the Opening Ceremony of the marathon.  It was the 50th anniversary of the Berlin Marathon, so there were many extra celebrations during the race weekend. 

Brandenburg Gate

The Opening Ceremonies

Berlin day 3
We carbo-loaded at a pre-race lunch with the Children’s Tumor Foundation NF Endurance Team!
Otherwise this was a self-imposed No Sightseeing Stay TF Off Your Feet Day.  After having the Best Day with Helen and Olivia the day before, my legs were paying for it.  I rested in the afternoon and H and O went exploring in Kurfurstendamm.

Our Team!

Pre-Race Gear Check

Berlin day 4
Marathon Day!
What an experience!  Over 50,000 people running together!  All on the same course as elite marathoners and world record holders.  I got very emotional at the start—standing next to people from all over the world in a beautiful foreign city, after so much punishing preparation, full of pent-up energy, excitement, and nerves.  I broke down when they played the theme song from Chariots of Fire.  I mean, come ON.  I was crying such that the woman next to me asked if it was my first marathon.  “No,” I sobbed. “It’s my twenty-first!”
 
A few things I’d never experienced in a marathon before:

-Starting dance.  Before the starting countdown, the organizers led us in a little dance!  (Hands to the left x 7, hands to the right x 7, step to the left x 7, step to the right x 7…)

-Distance marked in kilometers.  A marathon is 26.2 miles, but it’s 42.2 kilometers. Somehow that made it seem longer?
 
-Cheers in German!  Our first names were printed on our bibs, so I heard a lot of “Super, Kristina!” (sounds like Zoopah!) and “Lauf, Kristina!” (“lauf” being the German word for “run”).

-Original spectator signs: 
“Live Lauf Love”
 “You gave birth—you can run another 17K!” (at kilometer 25)

-Running through the Brandenburg Gate at the finish!

-Participating in a world record!  We learned after the race that there were 54,280 finishers at the 2024 Berlin Marathon.  The organizers announced, “Never before have more finishers crossed the finish line in a marathon race than at the 50th BMW BERLIN-MARATHON! With this verified record result, the BMW BERLIN-MARATHON is now the biggest marathon in the world!”

Lydia, our NFE Team captain, greeted me at kilometer 34

Helen took this video of me approaching kilometer 35!

A quick hug before finishing the last 7 kilometers <3

At the finish in front of the Reichstag

Our goody bags contained more chocolate items than usual :)

 
That evening we celebrated with our NF Endurance Team at the Biergarten Café am Neuen See in the Berlin Tiergarten, the city’s central park.

That's not really my beer, but it is my streuselkuchen :)

Berlin day 5
Helen, Olivia, and I had a big, post-marathon breakfast at our hotel, followed by a day at the Berlin Zoo. We finished the day with an evening view of the city from the Reichstag dome.

 

That’s a wrap!  THANK YOU to all my generous donors!  With your help, Jane and I raised over

$13,000

for the Children’s Tumor Foundation with this event!

 
Think of us next week as Jane and I head back to the National Institutes of Health for her semi-annual check-up and MRIs.  This is why I run <3

Labor Day 2024

Running Update:
Aug 2024   135.1 mi        22:42:48
 
I finished my 15th New Haven Road Race this morning!  Love this race.  (Read my paean to theNHRR from 2019 here.)  It was warm and humid for the race today, but not as hot as some years.  As usual, the people of New Haven turn out!  Thousands of participants in the half marathon, the 20K, the 5K, and the Kids Fun Run.  Even the mayor runs the 20K!  And I’m always amazed and humbled at how many people come out to watch.  These folks get up early on Labor Day—everyone’s day off!—to cheer on us crazy runners.

At the start

Starting up Elm Street

Coming up to the finish at the Green

Todd is my support team <3

Jane's neurologist, Dr Laura Ment, even runs the half marathon (at 75!)

I love this year's Elm City theme

 Next up:  the Berlin Marathon in 27 days!

Jane Update:

Jane’s summer activities included volunteering at our local library, visiting family in Canada, and getting her driver’s license!  School has already started, and soon she’ll be working on college applications <3

The whole family with Grandma Janet at Ash Rapids on the Lake of the Woods

Echo Bay with a full moon rising

First day of senior year

Jane's senior photo <3

NF Update:

We’re almost at $10,000 raised for the Children’s Tumor Foundation Berlin Marathon team!  Help get us over the top by donating here!  www.KRath4Jane.com

June and July

Running Update:

June run                           93.4 mi               15:32:29
June swim                        10.2 mi               7:20:00
 
July run (to date)             90.0 mi               15:08:52
July swim (to date)         7.2 mi                 5:21:00

The summer has been busy so far.  With work and training and with all three kids home, I haven’t had a chance to blog.  I’m happy to report that I’m keeping up with my running schedule, and that the limiting factor in my training has not been my knee, but the heat and humidity!  I’ve been able to manage my weekly long runs by starting in the early morning and by strategically placing water bottles at various points on my route the night before :)

Jane Update:

We didn’t get the final results of Jane’s last MRI until the end of May, but were pleased to learn that her tumor is still officially stable.

During our visit at NIH this spring, our team discovered a new defect in Jane’s vision, but we hadn’t budgeted enough time in our trip to see the ophthalmologist at NIH.  Back at home had to scramble to see our own ophthalmologist semi-urgently, which led to several stressful days.  (Aside:  I hate the whack-a-mole nature of this disease.  NF is relentless.)

The good news is that it turns out there is no new NF complication.  Phew.  She just needs glasses!  She wasn’t thrilled, but at least it’s not another GD tumor.  And I told her I would get (reading) glasses with her in solidarity, since I’ve been putting that off for a couple of years now.

Jane's selection.
(She would not pose for a photo wearing them!)

NF Update:

A milestone for NF: a prominent advertisement in the New England Journal of Medicine!  I was leafing through a recent copy of the NEJM and the word “plexiform” caught my eye on the back cover.  It turned out to be a commercial by SpringWorks Therapeutics, which is trialing another MEK inhibitor, mirdametinib.  (Jane takes selumetinib, the first MEK inhibitor approved for NF.)  Seeing the promotion of NF therapies in a place where I’d normally see advertisements for diabetes and blood pressure medicines made me feel like we’ve reached a new level of NF awareness <3

Back cover of the 7/11/24 issue of the New England Journal of Medicine

On that note: DON’T FORGET TO DONATE TO OUR BERLIN MARATHON CAMPAIGN!  The link is right here:

www.KRath4Jane.com

It’s because of donors like you that more and more research is being done into new therapies for NF!

An Unexpected Party and A Long-Expected Party

NF Update:  An Unexpected Party

On a late afternoon earlier this month, I got an urgent email from the Children’s Tumor Foundation looking for supporters in the New York area who could come into the city the next morning.  CTF had been given a last minute opportunity to ring the Opening Bell at the New York Stock Exchange!  I jumped at the chance—what a fantastic way to celebrate NF Awareness Month!  Jane couldn’t join me because she had her AP US History exam the following day :(

The NYSE had a large boardroom set up just for us

Leanna Scaglione was chosen as the bell ringer.
She lives with NF2 and runs with the NF Endurance Team--we ran
the NYC Half Marathon together this year.
This amazing woman had brain surgery for NF2 just two months before the race!

Simon Vukelj, Chief Marketing Office of the Children's Tumor Foundation
(and my Yale '92 classmate!)

The Exchange had the CTF logo everywhere!

Our view from the bell podium

With Barbara Gallagher, a VP at CTF, who also ran the NYC Half with me

We got to "tag" the wall as we left the podium

My contribution :)

Simon and me

On the red carpet

They even had the CTF logo on the building outside!

I stopped to take some pictures with Fearless Girl

CTF wrote about the event in its May newsletter.  And you can see the video here:

As NF Awareness Month comes to a close, we are still waiting on final results from NIH (from our visit a month ago!)  I hope to be able to post them soon.

Helen Update:  A Long-Expected Party

Helen graduated from Mount Holyoke College this week!  We are so proud of her and her accomplishments!

Preparing for the Laurel Parade.
Held the day before graduation, the Laurel Parade is a ceremony in which graduates walk through the campus draped in laurels and are cheered on by MHC alumna.

Helen with friends

With both Grandmas!

Dinner after the Laurel Parade

Commencement!

A big hug from Jane

Walking through the Gates.
It's considered bad luck to walk through the Gates before you've graduated.
Not for Helen anymore!