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!

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.