Running Update:
Month of August 2022 Running Total: 143.6 miles (24:26:47)
That’s the most I’ve ever run in a month! We’ll see if that translates to better endurance in my upcoming races :) Next week starts the fall race season—I’m running the New Haven Road Race Half Marathon on Labor Day. Labor Day is usually still hot in humid here in CT, but right now the forecast for race day is slightly cooler weather.
With the
start of fall races comes the start again of fundraising for the Children’s
Tumor Foundation! You can always donate
here:
Jane and Family Update:
Two out of our three kids are back to school this week.
We dropped Alec off at Lafayette for his first year at college! He seems to be doing well—he hasn’t been texting us spontaneously, which I guess is a good thing :) We did a video call with him a few days after he got to school and he was very chatty.
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| Alec's dorm |
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| Unpacking |
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| Alec and his new roommate! |
Jane has had three days as a high school sophomore and so far and seems happy with her classes and teachers.
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| Standard First Day of School family photo. Despite her expression here, Jane was excited to start school again. (Helen was a good sport and got up early with us.) |
Helen
is still home! She goes back to Mount Holyoke this weekend. It’s nice to have her home a little while
longer <3
NF Update:
The film A Different Man is due to be released sometime next year. Sebastian Stan (of Winter Soldier fame) stars as a man with NEUROFIBROMATOSIS alongside Adam Pearson, an actor who has NF in real life.
What I notice is different in this film than
from other films, and what makes me excited for its release, is that it stars a
person who actually has the condition being portrayed. No question, I’ll be anxious to learn more
about how NF is depicted—it’s a thriller, so there’s a risk that they will equate
“disfigured” with “bad guy”. (I’ve written about this before.) But I’m hopeful
that, with such a big star playing a person with neurofibromatosis, there’ll be
lots of side stories about “What is NF?”
It would be great if Stan himself advocates for the NF community—I’ll be
disappointed if he wants the accolades of portraying a person with neurofibromatosis without
learning how it really feels to have NF.
On a crazier note, it turns out that some people with neurofibromas on their skin are being harassed, in person and on social media, because others think the bumps are Monkeypox. Ugh. The Children’s Tumor Foundation had to release a statement to fight the misinformation: www.ctf.org/news/not-all-bumps-are-the-same-nf-is-not-monkeypox
I’m so
thankful to have an organization like CTF watching out for the NF community.
(I know I
say this a lot, but you can donate to CTF here:
KRath4Jane.com!)
