top honors here in Jacksonville UF
health Jacksonville's als Center has
been named a certified treatment center
for excellence by the ALS Association
ALS short for a Mayo trophic lateral
sclerosis it is a progressive disease
also known as Lou Gehrig's disease and
it Rob's patients of their ability to
walk and in some cases their ability to
talk it is very brutal to watch it
attacks nerve cells controlling muscles
throughout the body
now UF health Jacksonville is now one of
just two certified treatment centers of
excellence here in Northeast Florida
we're excited about this because it is
giving patients hope there is a woman
there on the screen all smiles that is
our co-worker in fact she's producing
the show today and she knows we love her
Sharon Siegel Cohen and she is battling
a form of this disease so she's
certainly making us more aware about it
very excited to have UF get this honor
as well so we want to bring in dr.
Michael pulley an associate professor of
neurology at University of Florida
Jacksonville so thanks for coming in
today
my pleasure to talk about what a
certification does and what it means as
far as what you all have done as a
hospital well in order to get the
certification we had to demonstrate
excellence and care of patients research
and that we are expanding and growing
our practice in ALS care does that mean
that you all have made that a priority
and something that you really want to
hone in on because we were just talking
I mean it's very rare to in 100,000 new
cases or people are affected by this and
so maybe 20,000 new cases every year
right and so yeah it is something that
we have prioritized as a department and
built a team that specialized in care of
these patients it is really important
that the people providing the care are
specialized and we've built a really
excellent team of speech therapists
physical therapists occupational
therapists respiratory nutritionists we
have our clinic coordinators we have
social workers it's a real team approach
and that's why we call it a
multidisciplinary clinic yeah that care
is so important it's being seen in every
aspect of the medical world right now
where you get these teams because every
because you're gonna treat the whole
body right you're not just treating one
thing right and it's important
that the patient can do one-stop
shopping in a sense come in for a very
extended visit where they're going to be
evaluated by all these different
providers and they're all talking and in
sync so one person may have another
suggestion while another may offer
something different and patients
sometimes reveal things to providers you
wouldn't expect that they'll tell the
speech therapist something that you
would think would be more for me but
that's why we have conferences before
and after we we meet the patients it's
just it's better care for patients as
they're going through this and you know
as we mentioned it's a brutal disease
you know it's progressive right now
there aren't there's not a whole lot of
options for patients once they reach a
certain point but talk about some of the
advances in the treatment for ALS
sure so there's one treatment that's
been shown to slow disease that's been
available for quite a long time and just
in the last year or so there's a new
treatment that's come along so we have
two different treatments now that are
used to slow progression and they're
certainly still a lot of research we are
currently participating in three
different clinical trials for new
treatments for ALS and there's no
shortage of interest from pharmaceutical
companies to develop new products and
and there's no shortage of support for
research in patients as well I mean so
you know we have someone out there who's
listening and they're battling this
there are options and I think that's
very important that people need to know
for that hope especially the clinical
trials and they should do their research
and make sure that they're they're
advocating for themselves to get in some
of those trials well there's the
research trials but also there is the
care of the patients who have the
disease now and so obviously that's a
really critical component of it and
that's what we specialize in and that's
that's what we're being recognized for
now our patients coming from all over
the state
oh absolutely we've been we've always
drawn patients from as far away as
Tallahassee actually come into
Jacksonville so it's been it's very
rewarding people ask me why I do this
and I say because patients need somebody
who knows what they're doing and who
really cares about the patients no doubt
about I know Sharon loves you she talks
about you so it's exciting to hear that
you guys have the certification and
certainly patients who are out there
this is maybe where you want to go and
definitely go to get some some hope and
some options for you as you're dealing
with this disease pre-shave coming in
Scott thank you