Running Update:
Less
than a month until the Philadelphia Half Marathon. But the good news is that last week I ran on
the road for the first time in two months!
Since August 11,
because of my knee injury, I’ve only exercising by elliptical and
swimming. But on October 11 I ran five
miles on the road! It was also two weeks
to the day after I had come down with COVID again (before my updated vaccine
had a chance to kick in.) My lungs weren’t quite 100%, but I figured that
would keep me from overdoing it with my knee :)
I was slow as
heck and wheezy and every joint hurt, but I was SO STUPIDLY HAPPY to be running
again!! Afterwards, I even went on the Philadelphia Marathon website and
briefly thought, “Maybe I could actually do the full marathon instead of the
half…”
I know some people think it’s crazy, but I truly do love running <3
So now I need you all to do your part: Please donate to our Children’s Tumor Foundation campaign! Help us to #endNF!
NF Update:
People
living with NF often suffer not only from the physical effects of their
neurofibromas, but also from the effect of the tumors on their appearance. This is particularly hard if someone, like
Jane, has neurofibromas on their face.
People with facial differences can experience harassment, stigma and
prejudice because of how they look. Other
people with facial differences can include those with clefts, craniofacial
conditions, and burn survivors.
Enter Face Equality International.
From
their website:
The mission of Face Equality
International (FEI) is to mobilise the many groups and organisations, big and
small, national and international, which support and represent people with
facial differences and disfigurements and thereby to create the critical mass
and solidarity needed to gain global attention for the campaign for face
equality.
“Together we can create a world where
anyone with a disfigurement is free to be unapologetically themselves. In order
to celebrate what makes us ‘different’, first we must recognise that it is
society that must change, not us. It is the limiting perceptions placed on
faces and bodies that do not conform to the ‘norm’ that we must change.”
Phyllida Swift, CEO of FEI
It was around this time last year that I shared Face Equality International’s excellent post about Halloween, reminding people that facial disfigurement is not evil or scary (I’ve also written about this), and so should not be used in costumes as such.
This year I thought I’d share FEI’s new petition calling upon the entertainment industry to include accurate, authentic representation of people with disfigurements and visible differences, to prevent further marginalization of the community. Take a look—it is well written and spot on: www.change.org/p/tell-hollywood-visible-difference-doesn-t-equal-evil
Jane Update:
This week Jane got her braces off for good! It’s been three long years—time to celebrate by chewing gum and eating popcorn again!
While it’s a relief for Jane to get the braces off from a comfort standpoint, it also makes a HUGE difference for our upcoming return to NIH and any future MRIs. Every time Jane would have an MRI she’d have to have her braces wire and any metal brackets removed a few days before the scan and then replaced afterward (even though we opted for ceramic brackets for this very reason, the anchoring brackets on her molars had to be metal). It was very inconvenient, and prolonged the amount of time she had to wear the braces. But that’s in the past now!
Though
we’re glad to be done with braces, we do love our orthodontist. After one of Jane’s recent appointments he
came to me in the waiting room to tell me:
Jane just said something that changed
my life. She asked, “Why do you ask
people to ‘bite down’? Shouldn’t you ask
them to ‘bite up’?” She’s changed my
whole world view. I’ll never say “bite
down” again.
Typical
Jane—changing people’s whole world view :)
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