►
Description
House Naming & Designating Committee - March 1, 2022 - House Hearing Room 2
C
Thank
you,
mr
chairman
and
committee
house
bill.
1857
is
alexander
disease
day
house
bill
1857
57
designates
april
7th
as
alexander
disease
day
in
tennessee
alexander
disease
is
an
extremely
rare,
usually
progressive
and
fatal
neurological
disorder.
Historically,
it
has
been
included
among
the
leukodystrophies,
which
is
a
disease
of
the
white
matter
of
the
brain.
C
Initially
it
was
detected
most
often
during
infancy
or
early
childhood,
but
as
better
diagnostic
tools
have
become
available,
has
been
found
to
occur
with
similar
frequency
at
all
stages
of
life.
The
disease
occurs
in
both
sexes
and
there
are
no
ethnic,
racial
geographic
or
cultural
economic
differences
in
its
distribution.
C
C
Typically,
there
are
both
mental
and
physical
developmental
delays,
followed
by
loss
of
milestones,
an
abnormal
increase
in
head
size
and
often
seizures
since
1949,
approximately
500
cases
have
been
reported
with
four
patients
currently
living
in
tennessee
grayson,
barry
ledbetter
of
chattanooga
john
cameron,
copeland
of
chattanooga,
marist,
brynne,
white
of
knoxville
and
gregory
chase
andrews
of
hampton,
and
with
your
permission,
we
would
like
to
go
out
a
session
to
hear
from
lee
mcclure
executive
director
of
end
alexander
disease.
Without.
C
D
I've
got
a
great
bill
because
this
is
and
first
of
all
thank
you
for
hearing
from
us.
Thank
you
to
representative
helton
for
sponsoring
this
legislation,
and
I'm
hopeful
that
y'all
will
all
want
to
co-sponsor
this
legislation,
as
as
representative
heltman
mentioned,
alexander
disease,
is
a
very
rare
neurological
disease
as
a
very
rare
meaning.
We
know
about
500
people
worldwide,
have
this
disease
and
there
are
four
young
adults
and
young
children
who
are
living
in
the
state
of
tennessee.
So,
relatively
speaking,
we've
kind
of
got
a
large
percentage
of
those
folks.
D
This
disease
is
there's
no
treatment.
There's
no
cure
right
now,
but
we're
very
hopeful
because
there's
a
clinical
trial
going
on
and
in
this
clinical
trial
there
there
is
reason
to
believe.
We
have
hope
that
there
may
be
a
drug
approved
that
will
treat
and
ultimately,
hopefully
cure
this
disease
april
7th.
You
may
be
thinking
why
alexander
disease
day
well
april,
7th
is
the
date
that
the
scientists
that
were
working
on
this,
the
research
scientists
saw
definitive
positive
results
in
mice
they
were
able
to.
They
said
they
sat
down
and
said:
oh
my
gosh.
D
We
see
that
this
is
actually
stopping
the
progression
of
the
disease
and
that's
the
drug
that's
being
tested
right
now,
so
we
wanted
to
go
ahead
and
bring
it
before
the
state.
Legislature
and
representative
pelton
was
just
all
on
for
us,
because
we
want
to
raise
awareness.
People
don't
know
about
this.
Not
only
do
most
people
not
know
a
lot
of
physicians,
don't
know
so
you
know
they
don't
even
know
how
to
diagnose
it.
So
we
want
to
raise
awareness.
D
We
know
that
fda
is
going
to
be
looking
at
it
and
we
feel
like
if
we
start
here-
and
we
acknowledge
this-
that
day,
other
states
will
follow
suit
and
we
can
build
some
momentum
to
say
this
is
an
important
disease
that
we
really
want
to
put
resources
to.
So
again,
thank
you
for
allowing
me
to
be
here.
I
have
some
family
members
here
who
may
want
to
speak
to.
You
know
how
this
has
impacted
them,
but
again
we're
appreciative
of
the
time
here
of
representative
helton
and
for
your
time.
Thank
you.
B
E
E
If
you're
a
mom
or
a
dad
or
a
grandparent,
you
know
you
want
to
fix
it
for
them,
but
when
we
met
with
those
doctors-
and
they
said
we're
sorry,
there
is
no
hope,
there's
nothing
there.
We
as
family,
we
decided
we're.
Not.
We
don't
take
that
as
an
answer,
so
we
developed
grayson's
ladder,
which
is
a
501c3
and
from
that
it
led
to
end
alexander
disease,
which
is
a
global
organization
that
our
family
was
part
of.
E
E
It
takes
the
brain
and
just
takes
it
away.
So
awareness
is
what
we're
here
for
that's
what
we're
trying
to
do
in
tennessee.
I'm
a
tennessean
lead
the
way
y'all.
We
will
be
the
first
state
to
adopt
this
and
and
to
hopefully
other
states
will
follow.
We
we
have
patients
scattered
out
that
we
work
with
and
talk
with,
but
thank
you
for
your
time
and
thank
you
for
listening
to
us
now
I'll
answer.
Any
questions.
E
F
First,
representative
hill-
now
I
do
want
to
sign
on
to
this
bill,
cause
tim
choked
up,
and
I
would
choke
her
too,
because
I
have
a
four-year-old
granddaughter
that
we
don't
know
what's
wrong
with
her.
It's
something
that
we
just
we've
taken
her
to
boston
and
all
that,
and
if,
if
you
don't
live
that
life,
you
don't
know
what
it's
about,
and
our
prayers
are
with
you.
Thank.
E
B
G
I
have
great
family
cameron
come
up
here.
Cameron
was
diagnosed
when
he
was
four
and
to
be
here
today
and
in
this
room
with
all
of
you
is
something
I
never
ever
would
thought
happened.
Cameron
was
diagnosed
at
a
time
when
it
was
extremely
rare.
We
didn't
have
all
the
facebook
families
we
didn't
have.
I
didn't
have
any
connections
or
anything
we
were.
G
G
G
Cameron
has
been
one
of
the
lucky
ones,
not
most
are
like
cameron,
they
most
are
on
feeding
tubes,
most
cannot
walk,
they
cannot
talk
and
it's
ugly,
it's
extremely
ugly
and
that's
what
we
were
faced
with
at
four,
but
every
year
has
passed
and
march
the
11th.
He
will
be
25
so
praise
the
lord
he's
he's
doing
as
well
as
he
is,
and
he
is
if
you
knew
him
and
would
meet
him
once
or
twice
you
would
know
he
is
a
shining
bright
light
in
the
world.
G
It
is
amazing
how
he
has
been
used
to
be
a
light
to
a
lot
of
people,
but
the
awareness
that
this
will
bring
to
the
disease
and
for
what
we
need
for
not
just
cameron
but
for
the
whole
alexander
family
around
the
world
is
amazing,
and
we
cannot
thank
you
enough
for
even
giving
us
the
time
to
be
here
and
to
listen
to
us
and
give
us
this
opportunity
for
the
whole
alexander
disease
family.
So
do
you
want
to
say
thank
you.
G
C
B
B
I
B
I
I
B
F
I
B
I
I
I
had
a
conversation,
one
of
the
members
really
about
how
hbcu
years
ago
had
to
close
down,
and
so
we're
trying
our
best
to
make
sure
that
particularly
knoxville
college
up
in
east
tennessee
is
able
to
sustain
its
stuff,
and
we
have
hbcu
day
next
wednesday
here
at
capitol
hill.
So
we
invite
you
certainly
to
come
out
and
sit
with
our
students.
There
thanks
chairman
committee.
B
J
What
this
is
hr
740
is
bringing
awareness
to
the
importance
of
music
therapy
in
our
state
and
really
across
our
nation,
and
you
know
really
kind
of
what
touched
me
with
this
is
there's
power
in
music.
You
know
whether
we
all
can
kind
of
find
common
ground
in
music.
We
may
not
find
common
ground
in
other
areas,
but
in
music
we
find
common
ground,
and
you
know
I've
got
a
sister
in
a
nursing
home.
I
think
some
of
y'all
may
know
this.
J
She
had
a
brain
tumor
at
30
and
had
a
bad
fall
about
three
years
ago.
In
fact,
I
was
in
committee,
I
was
in
insurance
and
she
had
a
bad
fall.
I
got
a
call
well
had
a
brain
bleed
just
couldn't
just
she's
a
nurse
tom
lost
everything
to
her
name
lost
every
single
thing
to
her
name,
so
I've
kind
of
seen
this,
but
what
was
powerful
was
I
seen
my
sister.
I
went
over
to
visit
her
nursing
home.
J
J
I
wanted
to
come
home
and
she
looked
at
me.
She
knew
the
words
of
the
song,
but
she
didn't
know
my
name,
and
she
said
you
know
how
to
gal
this
place
and
I
was
like-
and
I
couldn't
help
but
kind
of
get
a
little
chuckled.
You
know,
but
I
started
thinking
wow
the
power
of
music.
You
know,
and
I've
talked
to
james
dunn
who's.
J
J
Miss
carrie
fridale
she's
owner
and
a
clinician
at
in
harmony,
music
therapy
at
middle
tennessee.
Mr
dale,
thanks
for
coming
and
jenny
deck
assistant,
professor
coordinator
music
therapy
at
austin,
p
university
and
chrissy
watson,
she's
music,
therapist
internship
director
at
the
star
center
in
jackson,
tennessee
come
over
here.
J
Sparks
who's
first,
if
real,
quick
on
carrie,
you
know
she
invited
me
to
come
out
what
two
weeks
ago
and
I
watched
her
interact
with
some
parkinson's
patients
and
because,
when
I
used
to
think
of
music
therapy,
I
I
didn't
really
know
all
the
cl
scientific
clinician
aspect
of
it.
So
I
watched
her
interact
at
franklin.
First
methodist
church
over
in
franklin-
and
I
know
glenn
knows
that
that's
a
beautiful
church
and
I
watch
you
interact
with
these
patients
and-
and
I
I've
seen
some
some
great
work,
and
it
was.
J
K
K
I've
been
working
in
private
practice
for
16
years
throughout
middle
tennessee
and
a
little
bit
of
southern
kentucky
and
music
therapy.
Music
therapist
is
an
individual
who
has
completed
an
educational
program
approved
by
the
american
music
therapy
association,
including
clinical
training,
and
holds
the
music
therapist
board.
Certified
the
mtbc
credential
issued
by
the
certification
board
for
music
therapists,
I'm
originally
a
graduate
of
music
from
tribeca
nazarene
university,
and
I
went
on
to
earn
my
music
therapy
equivalency
degree
from
tennessee
technological
university
in
2005..
K
They
no
longer
have
the
program,
but
we're
going
to
talk
about
what
programs
are
in
the
state
and
the
populations
that
I
have
served
over.
My
career
have
included
children,
youth
adults
diagnosed
with
developmental
and
intellectual
delays
and
disabilities,
including
those
with
on
the
autism
spectrum
down
syndrome,
angelman
syndrome
and
cerebral
palsy
to
name
a
few.
K
I've
also
worked
with
older
adults
who
are
diagnosed
with
parkinson's
disease
and
other
neurological
conditions
and
dementia
related
disorders,
such
as
alzheimer's,
in
particular
related
to
children.
On
the
autism
spectrum,
I
have
used
music
and
music
related
interventions
to
work
towards
their
non-musical
goals
of
behavior
modification,
increased
communication
to
increase
socialization
skills,
because
making
music
is
very
social
interaction
and
increases.
Communication.
Like
I
said,
I
also
use
music
to
help
with
educational
goals
and
increase
understanding
and
cognition
as
it
relates
to
how
to
function
in
daily
life
and
as
related
to
persons
with
parkinson's
disease.
K
I
was
thrilled
to
have
representative
sparks
come
watch
the
peterson
voices
they
are
through
the
peterson
foundation
for
parkinson's.
This
is
brent
peterson's
foundation,
who
was
the
assistant
coach
to
the
national
preds?
I've
been
working
with
them
since
2017
doing
a
singing
group,
because,
with
parkinson's
your
voice
tends
to
lower
get
gravelly
become
monotone,
space
can
freeze
and
music
has
been
shown,
and
there
has
been
some
research
that
singing
helps
increase
their
vocal
volume,
and
we
have
worked
with
vanderbilt
university
to
study
the
group
as
well.
K
Music
activity
in
singing
with
a
group
ensemble
has
also
been
researched
to
show
improvement
of
mood
to
fight
symptoms
of
apathy
and
depression
because
of
my
training
board
certification
and
the
continuing
education
requirements
to
renew
my
credential
every
five
years.
My
clients
have
access
to
quality
care
to
track
and
follow
their
progress
through
music
therapy
techniques
and
best
practices.
L
Hi,
my
name
is
chrissy
watson.
I
come
from
west
tennessee,
so
I'm
over
in
jackson
and
made
the
drive
this
morning
and
was
pleased
to
see
that
our
entire
state
is
on
the
road
with
construction.
So
that's
really
great
to
see
that
it's
here
as
well,
but
I
have
lived
in
this
wonderful
state
for
almost
ten
years
going
on
going
on
ten
and
the
job
was
what
brought
me
to
tennessee.
I
was
living
in
north
carolina
before
also
practicing
there.
L
I've
practiced
for
a
total
of
15
years
as
a
board,
certified
music
therapist
and
have
loved
pretty
much
every
day
of
it.
It's
wonderful
to
bring
music
to
people
to
experience
their
change
just
because
of
as
representative
sparks
of
the
power
of
music
and
I've
loved,
seeing
that
in
I
work
for
the
star
center,
which
is
a
non-profit
in
jackson,
tennessee,
and
we
have
the
privilege
of
seeing
individuals
regardless
of
disability,
achieving
their
potential.
So
we
get
to
work
with
a
variety
because
we're
kind
of
it
in
west
tennessee.
L
We
serve
some
in
memphis
as
needed,
but
we
have
music
therapists
across
the
state,
but
there
is
kind
of
a
little
dearth
of
music
therapy
in
west
tennessee
and
we
would
love
to
to
see
more
of
it
or
at
least
allow
people
to
be
aware
of
that.
Music
therapy
exists
and
has
the
potential
to
make
so
many
life
impacts.
L
L
Remember
the
name
of
her
new
granddaughter
who
was
born
after
her
dementia
diagnosis
and
be
able
to
use
music
to
help
her
create
lullabies
for
her
granddaughter.
That
has
been
one
just
immense
pleasure
of
mine.
We
also,
as
representative
sparks
said.
We
also
have
an
internship
program
there
right
now.
There
are
only
three
national
roster
internship
programs
in
the
state
of
tennessee.
L
That
means
that
a
lot
of
students,
jenny
will
speak
to
in
a
second
who
go
through
music
therapy
programs
here
in
our
state,
don't
have
anywhere
to
go
for
an
internship
and
that's
a
requirement
to
complete
our
degree.
So,
in
order
to
practice,
they
often
have
to
go
out
of
state
and
guess
where
they
stay,
they
stay
out
of
state.
L
We
actually
had
an
intern
recently
who
was
from
jackson,
but
because
indiana
has
a
waiver
program
and
music
therapy
is
all
included
on
that
and
everybody.
There
is
aware
of
music
therapy
as
a
profession.
She
found
a
great
job
there
and
unfortunately
had
to
leave
our
county
and
our
state
to
go
work
there,
and
hopefully,
one
day
we
will
have
her
back
she's
a
wonderful
music
therapist,
but
it's
that
type
of
access
that
we
are
hoping
to
seek
for
our
clients,
specifically
awareness.
L
Today
we
would
love
to
just
see
people
in
our
legislature
understand
a
little
bit
more,
maybe
about
music
therapy.
We
welcome
whatever
questions
you
guys
have
and
we
just
seek
to
raise
that
awareness
in
our
state,
because
I've
loved
the
10
years
that
I've
stayed
here.
I
would
love
to
stay
for
much
longer
and
see
more
growth
as
as
we
go.
Thank
you
so
much.
M
Just
very
quickly
I'll
chime
in
here
my
name
is
jenny
denk
and
I'm
assistant,
professor
and
coordinator
of
music
therapy
at
austin
peay
state
university.
I'm
proud
to
share
that.
Last
week
we
celebrated
our
program's
first
birthday.
Our
program
is
the
newest
program
in
the
state,
along
with
university
of
tennessee
at
chattanooga
and
belmont
university.
We
are
the
three
training
universities
that
offer
this
degree
program.
B
J
You
know,
I
don't
know
if
any
members
had
any
questions
for
them.
I
do
think
that
you
know
I
have
this
this
crazy
theory.
You
know
I
brought
up
in,
I
think
it
was
financed.
Last
week
we
were
meeting
with
tdoc
about
our
prison
budget.
It's
increased
600
million
dollars
since
I
was
elected
in
2010.,
600
million.
So
I
was
thinking
you
know,
because
a
lot
of
those
folks
have
anger
problems.
They've
got
hurts
if
you
go
back
and
study
behavior
and
the
disconnect
that
exists.
J
Sometimes
I
do
think
that
that
this,
if
this
moved
the
needle
one
percent
one
percent,
that's
significant.
That's
significant.
We've
got
a
mental
health
crisis
on
our
hands.
As
we
all
know,
and
one
person
I
do
want
to
recognize.
A
guy
named
j.t
cooper
back
home.
He
works
with
a
group
called
warrior
rounds.
He
works
with
nashville
songwriters
and
he
gets
these
guys
together
and
they'll
help
they'll
work
with
folks
that
have
lost
a
loved
one
in
iraq
or
or
work
with
former
veterans.
B
N
Thank
you,
mr
chairman.
First
of
all,
I'd
like
to
say
that
music
is
important.
Songs
are
important,
and
I
appreciate
you
taking
the
time
to
go
beyond
representative
sparks
and
find
some
good
in
those
stillness
stories,
as
you
have
many
times
about
amazing
grace
and
john
newton,
a
slave
ship
owner,
and
how
he
became
saved
and
became
a
preacher
and
an
advocate
working
with
william
oberforth
to
get
the
slaves
free.
Yesterday
I
was
thinking
about
one
of
my
most
beloved
songs,
which
is
it
is
well
with
your
soul.
N
It
is
well
with
my
soul,
and
many
of
you
probably
know
the
story
behind
that.
Horatio
spafford
was
a
very
wealthy
lawyer
in
chicago
and
he
had
four
children,
one
son
and
three
daughter,
four
daughters.
He
had
five
children,
one
son
and
four
daughters
and
during
that
time,
in
the
1800s.
That's
when
the
great
fire
of
chicago
left
him
with
a
lot
of
his
wealth
gone
in
that
fire
right
before
that
time.
His
four-year-old
son
son,
horatio
jr,
had
passed
away
about
a
year
later
after
they
got
through
that
tragedy.
N
H
H
F
B
You
representative,
johnson,
back
to
representative
doggett
questions
been
called
for
all
in
favor
of
bill.
Go
on
the
calendar
rules,
please
say
aye.
All
opposed
no
bill
goes
to
county
wilson.
Thank
you
again
for
being
our
visitors
today.
Thank
you.
You
did
an
excellent
job.
We
appreciate
what
you
do.
Thank
you.
Thank.