does equine Nice yeah. Welcome
back to Ozarks FOX am March a
cerebral awareness month and
joining us now via zoom.
Is just the Lynn Cohen, the
vice president of
communications engagement for
say Park which is so real
policy alliance Research
Foundation jostle on. Thank
you for coming on this morning
and you have CP yourself is
that correct.
see and it's what makes this
job so reporting of every day
I'm able to use my voice
advocate for myself and for
others but several palsy there
are a million of us in the
U.S. and 80 million of us
worldwide so so I'm really
happy to be here and have you
have this incredible what
we're so glad you're joining
us. And March is awareness
month now what would you say
to somebody you know I was
reading some of information
and it's like there's so many
people affected and you really
don't hear about it very often
and I know you need funds to
people to know during March
for this awareness month.
Yeah, Jerry what I want
people to know is that CP is a
wide range of conditions so if
you know one person with few
story you know that one story
I have a friend, those run the
New York City Marathon but
reject which affects half his
I know someone else who can't
speak can't use his hands
can't walk. He also has CPA
and cfp runs the gamut my
friend marathon of my friends
who can't speak every single
person with CP needs help
every kind of CP deserves the
research that we're doing
right now.
probably as Jeremy knows about
CP is this something that
you're born with that or or
does it develop later.
So CP is a brain injury
that occurs. Shortly before
during or shortly after You
can get the honestly, any time
up to age 2 and it can come in
since can have strokes I know
people don't really think
about that but they and one of
the the research areas that we
find is early detection and
early intervention so the
sooner you get in there and
the child the therapies they
need of the more likely they
are to reach high potential
that the cat.
Just I'm just I love what
you said earlier about the
because my nephew is 13 with
CP he he is physically like he
can walk and and run even but
he can't speak so it does
affect people so differently
and I think that part of the
problem is some of the issues
was a size that they don't
know how to treat or how do
you want to be treated and
what's the best way to
asked if they need assistance.
That's right. It really
does run the gamut it's based
on where your brain injury the
best way to approach him ocp
is if you feel like you see
someone that might need help
feel free to ask if they need
help is that if they say no or
and communicate know in some
way let them do what they need
to We are Masters at
adaptation with this
disability getting around It
might look like it's harder
may or may not be but we live
in our bodies, our whole
lives. I you know what we're
doing we appreciate help but
we also appreciate you know
backing off if we say we've
got it.
That is good information to
know to ask for speak at not
just to assume because you
never want to offend anyone so
I that's something that I just
learned so that's that's great
absolutely to an end and was
speaking of funds what type of
research is being done
currently to help people with
CP people living within their
families.
Yes, so we have 5 research
areas that we fund and we are
the only the form of
circulation that only focuses
on several policy research is
right so we have the early
detection early intervention,
which I mentioned before
chronic pain of 75% of people
with including myself
there's this thought his that
we're funding right now ship
that is implanted at the
surface of the brain that can
turn intentional thoughts into
speech and that is in clinical
trial. So we're really excited
about We're also funding.
Regenerative medicine research
which is actually to reduce
the severity of CP and
genomics research which can
create precision medicine down
the line.
Wonderful so they need
money obviously so how can
people help.
So the easiest way right
now is to just started
facebook fundraiser you can
find us facebook at research
or CPU the word of FL or and
you can just click to start a
facebook fundraiser really is
you can do that any time. But
March is is the best time to
do it and then in September we
run our flagship fund raiser
called September where we
challenged people to take
10,000 steps a day in whatever
way works for There are 60
plus activities that purchase
steps, including things like
physical therapy and moving in
a and using weights and hand
cycling so it's inclusive and
anyone with any ability do it
things like housecleaning also
kind of steps. So just keep an
eye out for that and all it's
a monthlong the shouldn't
nexstar has done it before and
you guys were the talks that
organization in 2020 and the
number 300 organizations what
does and that makes me so
happy and by the way I love
how open you are with.
With living with this and
you've got to send us a video
2 of you just you know you say
hey look I sometimes walk
differently don't don't be
afraid and I love that you
said that just because you're
so willing to share your life
like when you climb says we're
looking at some video view
climbing stairs and walking
and eating and you're being so
open that takes so much
courage. So I appreciate doing
that for us lately.
and I think one of the really
important things that
disability is also When when
we don't have accessibility to
seen in public, know I think
that's really important to
share my story so that you
know we're not everywhere and
health of so that you can see
us are everywhere, you know
we're not we're They were were
regular humans and we just
have something else in our
lives and it's visible so you
see it whereas other people
sometimes get you to What
their challenges are
disabilities like the.
How perfect that you The
president of communications
for this because I I think
that's healing for you is that
correct and then for for those
that you help.
I I really.
Appreciate being able to do
this work and also to to
reshape some of the language
around it and help reshape
perceptions I know it's a slow
process, but I'm doing it
little by little and even in
talking with the researchers
there's not a ton of of work
done for adults CP this is a
childhood disability that is
lifelong a lot of think about
it so some someone's knowledge
of CP might be they medicate
with CP. You don't think that
kid's going to be 2030 4050
6070 years old, but they will
challenges over the lifespan
and we hope to eventually
extend our research also into
aging and other things that
would the lifespan with the
and we are so thankful you
came on the show they thank
you where this month is March.
Thank you again so much we
hope you come back for
September.
I hope so too have a great
day. Thank thank you don't go
anywhere lots more from those
and right after this.
So much to learn about
something all wholly different