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.
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| 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 |
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| 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 |
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| Our NF Heroes! |
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| 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. |
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| 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! |
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| 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. |
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| This young woman, Lakendra, has no connection with NF--she just generously volunteers her time to any worthy charity event. |
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| 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! |
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| Keri's son, Oliver, age 4 |
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| 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! |
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| Nychelle's smile lights up a room <3 |
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| Dr Buono gave the keynote speech |
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| The walk begins! We circled the whole concourse at Dunkin' Park. |
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| Christal and her family <3 |
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| Chew Chew, the Yardgoats' mascot, joined us |
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| Keri and her family. Keri's mom just had her knee replaced, but still came out! |
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| Christal's son helped me manage Henri <3 |
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| Stopping for snacks |
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| 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.
