The NF Northeast Steps2Cure Walk in Hartford

Running Update:

No running—resting my knee.  Training for the Berlin Marathon starts next month.

 

NF Update:

Yesterday was the Neurofibromatosis Northeast Steps2Cure NF Walk in Hartford!  The walk took place at Dunkin' Park, home of the Hartford Yard Goats baseball team.  We had perfect weather—60 degrees, sunny, and blue skies—much different than the chilly rain we had last year.   Through the hard work of the NF Northeast staff and the tireless efforts of the NF families in Connecticut, we had a record turnout!  More than 80 people registered—over three times the number who participated last year!  And as of the start of the walk, the event had already raised over $15,000, and that didn’t even include the funds that came in during the day or the donations from the walk’s corporate sponsors.

What a great way to kick off NF Awareness Month in May!

I met lots of new NF families and was moved and impressed by an industrious and generous young group of volunteers.  I’ll share some stories with these pictures.

First, a shout out to YNHH/NEMG for letting us put up a NF display
with information about the walk at our North Haven medical center

Getting set up.
More than half a dozen young people from Quinnipiac University, Team Impact, and VolunteerMatch showed up at 7am on a Saturday to offer their time (and muscles!) working at the walk.
I was so touched by their generosity.  This generation gives me hope <3

Our NF Heroes!

I was excited to meet Madalyn, who lives with NF1 and who is
days away from graduating UCONN School of Medicine
and starting a residency in Pediatrics at Yale!!
I'll look forward to working with her.

This is Paige, a Physician Assistant student at Quinnipiac University, whose niece lives with NF.
Paige recruited several of her classmates to volunteer at the walk!

Dr Frank Buono is a Psychologist at Yale and is the one who nominated me to
the Board of Directors at NF Northeast.  He himself lives with NF1.

This young woman, Lakendra, has no connection with NF--she just generously volunteers
her time to any worthy charity event.

This is one of those stories that make you think some things happen for a reason.
This is Keri, whose son Oliver lives with NF.  Keri works for an ob/gyn group in the New London area that is part of NEMG (the same branch of Yale-New Haven Health for which I work).  While I was advertising the Steps2Cure this spring, I got the OK to email NEMG offices in the New Haven area.  One week I accidentally emailed a notice to the New London office list (the address included "NH" vs "NL"--an easy mistake to make!)  Keri saw it and contacted me to tell me about her son and their NF journey.  She enthusiastically joined the walk, and alone raised over $1500 for the event!

Keri's son, Oliver, age 4

These wonderful people are Nychelle (far right) and Christal (second from right) who work with me, and Christal's family.  They gave up their Saturday morning to support me!

Nychelle's smile lights up a room <3

Dr Buono gave the keynote speech

The walk begins!  We circled the whole concourse at Dunkin' Park. 

Christal and her family <3

Chew Chew, the Yardgoats' mascot, joined us

Keri and her family.  Keri's mom just had her knee replaced, but still came out!

Christal's son helped me manage Henri <3

Stopping for snacks

I was so happy to meet Keri in person.
No one understands you quite like another NF mom.

Jane Update:

Meanwhile, Jane and I arrived at NIH this afternoon for her semi-annual check-up and MRI.  I’ll post again once we return home to update on our visit.

Birthday Girl!

Running Update:

Now that the NYC Half is done, I’ve decided to hold off on running the local Cheshire Half in April to give my knee a rest.  I want it to be strong enough to start training later this spring for the Berlin Marathon in September.

Speaking of the Berlin Marathon, our CTF NF Endurance Team for Berlin had its first Zoom meeting last month and I presented the “Mission Moment”—what inspires us to run.  You can watch my segment here:

NF Update:

NF was recently featured in People Magazine!  Michele Holbrook lives with a form of NF called Schwannomatosis.  Despite multiple surgeries and daily pain, she is a tireless advocate and fundraiser for the NF community.  Check out the article here!

Meanwhile, NF Northeast is gearing up for NF Awareness Month in May with the Hartford Steps2Cure NF Walk.  Northeast Medical Group (my division of Yale New Haven Health) featured Jane and me in its quarterly newsletter to help drum up support for the event.

The text reads:

On April 27, 2024, the Steps2Cure NF Walk, to benefit NF Northeast, will take place at Dunkin’ Park Concourse in Hartford, beginning with a 9 am registration, followed by a 10 am start time. Neurofibromatosis (NF) is a genetic condition of the nervous system that causes tumors to form on the nerves, in or on the body, at any time. There is currently no cure for NF, and it has very few treatments. Planned by NF Northeast, an organization whose mission is to bring hope to those affected by NF and allied disorders, the quarter-mile walk kicks-off NF Awareness Month and raises funds to support its programs: patient advocacy, research, and patient education. This event is personally special for NEMG’s Kristina Rath, MD, whose daughter lives with the effects of NF daily. “My 16-year-old daughter Jane has neurofibromatosis, and each year, this event helps us get one step closer to finding a cure,” said Dr. Rath. “Because of NF, Jane has been in three separate clinical trials, has had two major surgeries, and has had over three dozen MRIs in her short lifetime. We are part of NF Northeast, an organization with a mission to bring hope to those affected by NF through research and community.” For more information about participating in the walk, or donating, click here. If you are interested in volunteering for the event, contact Sara-Jane Griffin at 781-272-9936 or sjgriffin@nfnortheast.org.

Jane Update:

Can you believe this amazing young woman turned 17 this month?  My heart <3  The world is her oyster!  We can’t wait to see what wonderful things are in store for her.

Jane at her birthday do

The 2024 NYC Half Marathon

This year the NYC Half Marathon fell on March 17, St Patrick’s Day!  The city was already busy with the St Patrick’s Day Parade when I arrived in New York Saturday morning.  It was my seventh in-person NYC Half, all of them for the Children’s Tumor Foundation.

I got in early enough to catch a CTF NF Endurance Team meet-up.

Our team captain, Lydia, had already picked up my bib for me so I didn’t have to battle the parade crowds on Fifth Avenue, where the Expo also happened to be held.  At my request, she got a picture of herself with my bib and a photo of my name on the NYRR wall.

Team captain Lydia (R) with Barbara Gallagher, a VP at CTF, who also ran!

Saturday afternoon I rested in my hotel with my feet up and went over my plans for race morning.  At one point I had to consult with a native New Yorker, my dear friend and college roommate, Dara, to confirm that I was reading the subway schedule right.  The train I had planned to take from my hotel to the race start was under construction, and it wasn’t clear to me which stops were affected.  She reassured me that I had picked the right route and station, but expressed concern about me riding the subway alone on a Sunday morning before sun-up.  I told her not to worry, that I was confident there would be plenty of other runners riding with me.

Sure enough, Sunday morning about two dozen other runners got on the 6:05am train with me at 50th street, and the train itself was already standing room only with other runners!  (Dara later commented “Y’all are an odd bunch!”)

(On a side note, I had also asked Dara to wish me luck that my knee would hold up during the race.  She sent me this screenshot of her calendar.)

My start time was 8:20am :)
Who could ask for a better friend?

Obligatory Flat Runner shot

We couldn’t have asked for better weather—partly cloudy, 50 degrees, and dry—unlike the frigid temps we had last year.  I arrived at the starting area in Prospect Park, Brooklyn in plenty of time to hydrate and use the ubiquitous Port-a-Potties before my corral opened.  While I was waiting around, I saw another woman wearing a Children’s Tumor Foundation shirt, someone I didn’t recognize from our team.  I hailed her down and introduced myself.  Her name was Sasha and it turns out she had been running for CTF for several years (ctf.org/news/nfe-athlete-spotlight-sasha-drebskaya). She has three young children with NF, and only learned after her children were diagnosed that she herself has NF.  I was thrilled to meet her!

As usual, the NYC Half was part road race, part tour of the city.  We ran from Prospect Park to Central Park in Manhattan via the Manhattan Bridge.  We passed through both Grand Army Plazas, past Grand Central, and through Times Square. And—thanks to Dara’s prayers to the Knee Goddess I’m sure--my knee didn’t bother me for the whole 13.1 miles.  Being St Patrick’s Day, there was lots of green and lots of Irish-themed signs held by spectators, with messages like “You sham-rock!” and “There’s a Pot o’ Gold at the finish line!” and, most popular, “Hurry up and finish so we can drink! Sláinte!”  In Times Square, another spectator, channeling John Cena at the Oscars, was apparently nude and holding over his private parts a sign that read, “Run faster or I’ll drop this sign!”

Running over the Manhattan Bridge

In front of One World Trade Center

Running up FDR Drive on the East Side

Lydia and our cheer team were waiting for me
in front of the CTF offices in the Chrysler Building!

Past Grand Central Station on 42nd Street

Done!

We learned after the race that Lil Nas X had joined us!  Unlike most celebrity runners, he even registered under his real name, Montero Hill. 

Watch a clips of his run here!

We also learned that more than 27,000 runners participated in the race this year—the largest field ever for a NYC Half Marathon!

My second favorite marathon comedy sketch (after Liz Miele's).

Most importantly, with this race Jane and I raised

$8432

(so far!) for the Children’s Tumor Foundation!  Thank you to all our wonderful donors!

<3 <3 <3

Incidentally, March 17 was significant in one more way:  it was Henri’s fourth birthday!  Helen bought him a treat to celebrate.

It's a New Year!

Running Update:

January to date:

Run/elliptical     102.4 mi             16:05:00

Swim                   8.8 mi                  6:14:00

Happy New year, everyone!  It’s a brand new year of advocating, fund-raising, and racing to help improve the lives of people living with neurofibromatosis!

I’ve been working with a trainer/physical therapist and am optimistic my knee will be strong enough to handle our race schedule. 

Our spring 2024 events:

New York City Half Marathon—Sunday, March 17

Cheshire Half Marathon—Sunday, April 21

Our fall 2024 events:

New Haven Road Race Half Marathon—Monday, September 2

Berlin Marathon—Sunday, September 29

Philadelphia Half Marathon—Saturday, November 23

Feel free to donate here to kick off our 2024 fund-raising for the Children’s Tumor Foundation!

www.KRath4Jane.com

 

NF Update:

Late last year I joined another effort to help find a cure for NF.  I became a patient representative for REiNS, Response Evaluation in Neurofibromatosis and Schwannomatosis (https://ccrod.cancer.gov/confluence/display/REINS/Home).

The REiNS group is a collaboration between NF researchers, patients, and other members of the NF community to establish standards for how to evaluate new NF treatments.  Without agreed-upon standards for evaluating, say, how a new medication affects a neurofibroma, it can be hard to compare treatments.  For a simple example, if one study showed that Medicine X reduced the size of a tumor, but another study showed that Medicine Y reduced how often a tumor needed surgery, it’s difficult to tell which treatment is better.

This is from the REiNS website:

 “Most early NF clinical trials used study designs similar to those used in cancer trials; however, because of differences in disease symptoms and tumor growth compared to solid cancers, there is a need for new designs that are better suited to NF. The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration was established in 2011 to reach agreement within the NF community about the design of future trials, with an emphasis on measures of response to treatment, also known as endpoints.”

I’m looking forward to learning and contributing!

Jane Update:

The big news this week:  Jane got her driver’s permit!  She’ll be starting Driver’s Ed next week.  In Connecticut, once you pass the permit test you have to attend 30 hours of classroom instruction and have at least 40 hours of behind-the-wheel, on-the-road training before you can take the road test to get your license.  Jane’s going to be busy!