and now because um uh our uh Dr Wheelock
has known our final speaker for so many
years I have decided to ask Dr Wheelock
to introduce our final speaker
Sherry um so it's been as I mentioned
before my pleasure to meet so many
amazing families over the years and and
um in the work that we've done in our
Clinic and our next speaker Sherry is a
remarkable exceptional young woman that
I've known for a long time um Sherry
will tell you her story individually I
want to tell you that she's a member of
the board of the hdsa northern
California chapter which is one of the
best chapters in the country she's also
one of two advisers for the National
Youth Alliance chapter in Northern
California she's one of the remarkable
young people who reaches out to people
uh young people ages 9 to 30 who come
from families affected by HD whether
they have symptoms already or they're
understanding their risk or they're
helping take care of their parents or
brothers or sisters she's there to reach
out and help people and with that I'd
like to introduce
Sher hi my name is
Sherry and um I'm going to talk about
what it's like to be at risk for
Huntington's
disease uh this this is a picture of me
and my mom's dog Marco at Christy field
in San Francisco we have our annual HD
walk there every October and Marco looks
forward to it every
year um he's now the baby of our
family so as you know I am 27 years old
I was born and raised in Sacramento I
graduated from college in the Bay Area
in 2005 and and I'm currently living and
working in San Francisco for an
alternative investment consulting
company
I have two older brothers and an older
sister and that's my mom Judy back here
blue um actually I'm just going to go
back a slide so um the foggy weather
kind of in San Francisco is how I feel
about my future with HD and I dream that
my future will be bright and sunny
someday without having to worry about
it um so everyone's experience with
being at risk is different and um so far
there have been three phases in my life
and the first one is um having family
members who have already passed away
from Huntington's disease so the um man
on the left is my great grandpa Joe he
died from Huntington when he was 60
years old and the woman on the right is
my grandma June and she died from
Huntington when she was 55 and the Man
in the middle is my Uncle Joe he died
from Huntington when he was um 53 and he
was a um my Grandma had already passed
away when I was born but um my Uncle Joe
was a a very important part of my
upbringing and um he didn't have any
children so all of his um nieces and
nephews were kind of like his kids and
he go to our graduations and we you go
to his house and he liked to see all of
us compete together and race in his
pool so here are two pictures of me and
my dad and uh the picture on the left um
is me when I was probably about six and
my dad was 36 and the picture on the
right is when I was um 19 my dad was uh
probably about 50 and as you could see
um the picture on the left my dad is
squatting and the picture on the right
he is bedridden so a lot changed from
those
years um so this is p Phase 2 growing up
with HD and um often I'm laying I'm
actually sitting with him in his
hospital bed on the right cuz we kind of
my sister and I like to try to sit near
him and hold his hand so um excuse me uh
my dad was sick for 11 years and he was
diagnosed when I was 9 years old my
parents called a family meeting to uh
get us all together and tell us and I
think that was the last family meeting
we ever had it was just um we didn't
need to get together to talk about that
but um they told us that my dad was
diagnosed and that we were at risk and
we all knew kind of what Huntington was
like because my Uncle Joe had already
been sick with Huntington ever since I
can remember he had a lot of Korea and
actually my dad had more Parkinson
symptoms he was very stiff and rigid so
um and more psychological kind of issues
um my dad passed away when I was 20
years old and um often when he was sick
I would see his sweet self come out of
the Shadows of HD but he had a lot of
psychological changes throughout his
battle with Huntington he suffered from
severe
depression Suicidal Thoughts
hallucinations uh lack of patience
violent outbursts he had obsessed of
compulsive issues and um
anxiety um so my dad's uh Behavior was
really difficult to be around during the
progression of his disease and he would
do things like uh ask us to go help with
the dishes and you know most adolescent
kids are like oh yeah one minute like
I'm doing my homework and then uh but if
we didn't come right then he would lose
it and um like grab our arm spank us and
he just had no patience so he was kind
of like a ticking Time Bomb we kind of
never knew what would set off so I you
kind of try to um just make him happy do
it if he's asked to do the dishes go do
the
dishes um but it was hard to keep
telling myself at such a young age that
it was not my dad that it was the
huntingtons because my dad was actually
a really sweet person underneath at all
um my dad was always changing medicines
and whenever he would um my mom was
always trying to kind of call Dr
Wheelock and be like oh what should we
put him on and then they would try it
and sometimes it wouldn't interact well
with the other drugs he was on and
sometimes there would be all these
negative side effects and then they'd
have to go back to the drawing board or
if it did work then his um symptoms
would change and then they'd have to go
back to the drawing board again so it
was just a constant battle um trying to
find something that would make him feel
okay um when I was in senior in high
school um my dad got a blood infection
and was in the hospital for about a
month between Thanksgiving and Christmas
and my never my dad never walked again
after that visit um his behavior
improved now that he was bedden though
because I think he didn't have to think
about walking and doing all the simple
things that or things that we think are
so simple it it was hard for him and
when he could um walk who's very Tippy
would break Furniture would put holes in
the wall um he fell down the stairs HD
his head so it was always kind of
stressful for him I think and then we
were also worried that he would get
really injured but he never really did
um but even just a meal was very
stressful for him um having enough
coordination to chew and swallow without
choking was very difficult and he had a
hard time communicating what he wanted
or needed so we asked a lot of yes or no
questions and my dad passed away in 2003
um at home in his hospital bed with all
of us around him and um so my coping
mechanisms during that period in my life
were to stay busy I uh I was in high
school in college so I had lots of
friends and I swam and played water
polo so
fortunately um my friends would invite
me to their house and make me part of
their family as well so um I'd also
attend attend the hdsa national
conventions and those were very
beneficial for me because I met other um
kids my age that were in the National
Youth Alliance the NY and they had
parents that were sick as well so um not
only did we relate on the level like my
mom or dad with HD does the exact same
thing that your dad does and just
knowing that I wasn't alone made me feel
so much better but then also we could
discuss the issues with our own life
being at risk for inheriting that same
disease so I still we still I mean once
you meet somebody that can relate to you
on that level you become instant friends
and your friends forever so I love my HD
friends and and then also um through the
national of the northern California
chapter the hgsa I've met so many
amazing families in the area and we
always get excited to see each other at
events and so yes growing up with HD was
very difficult but um and a very
life-changing experience but I survived
and I'm standing here today so that's
good um this is a picture of me skiing
just a couple weeks ago for my 27th
birthday and um the third aspect of
being at risk is just dealing with your
own life and I think so far that's been
the
hardest so as an atrisk person when you
turn 18 you have the choice of getting
tested ever since the gene was found in
199 3 as Dr weok was saying and um I've
decided at this point in my life I'm not
going to get tested um is there a chance
I might change my mind yes like if I
decide to have kids or I don't know it
you just don't know how life's going to
change but for now I think if I tested
positive I would symptoms search even
more than I do
now so let's say for my symptom
searching um if I trip or fall or mess
up at work I automatically think oh I
might have HD if I'm having like if I'm
moody or something I'm like oh maybe
this is like the first signs and just
con constantly always like overanalyzing
so if I go about like six to 12 hours
without thinking about HD in one day I'm
like oh that felt really good you know
it just kind of overtakes so you just
really have to be disciplined with your
thoughts and um and just try to stay
positive um and then also um as at
risker since I have a there's a chance I
could be negative although it feels very
small even though it's
50% um I kind of hold on to that little
hope like oh maybe I'm just mental and
like thinking things up in my head so I
can't speak for everybody that's at risk
but I think most people that are at risk
think there's about a
99.999% chance you're going to get HD
you kind of just weigh your options like
that you're just like oh I'm probably
going to get it um but really it's 50/50
um I'm just so terrified to get sick it
scares me more than any natural disaster
cancer being hit by a bus I live in San
Francisco being beat up by a bum
anything it scares me
more than anything and I used to be a
very optimistic person and I still think
I am a little bit but I just can't
convince myself that everything's going
to be okay and I feel like I'm just
angry that um my future might get
cheated I might get cheated for my
future and I I love outdoor activities
as you can see I'm skiing and uh I love
traveling reading
talking walking um eating very good at
eating and um I just don't want to give
up those things I love most in life my
relationships and my
Independence and especially since I've
seen how my dad um his progression on
disease I kind of know what to expect
which is almost worse than just getting
it and not knowing but everything is
affected by being at risk um medical
insurance long-term care insurance life
insurance my job um and the reason why I
didn't give you my last name is because
of this
discrimination um and HD folks are
discriminated against and it makes life
that much more difficult because um we
want to stay silent which makes all your
feelings kind of build up even more and
makes you feel worse but I want
everybody to come out of hiding so we
could stand together and ask cirm the
government and researchers for help we
need help and I often feel really
desperate um just for some sort of
treatment or
cure excuse
me but the only thing i' I felt
optimistic about stem cell research and
the work Dr n is doing at UC Davis is
amazing I'm very grateful for her DED
dedication and friendship in addition my
family would have made it through the HD
Journey if it weren't for um Dr relock
and um Terry tempkin the nurse
practitioner I am just so grateful to
have such amazing doctors and
researchers and they pour their heart
and soul into their work and make a
difference to those affected by HD I'm
just extremely grateful and whenever I'm
having a rough day think about um stem
cell research and it just gives me hope
and sometimes that little hope gets me
through a negative thought or a bad day
and I it I'm just very hopeful so um
this is the last picture it's of the
National Youth Alliance in 2009 um we
have a con convention the National
Convention every year and this was in
Phoenix last year and the group keeps
growing so the picture keeps getting
farther back so you can't really see
people's faces
but um everyone in the National Youth
Alliance is under 30 years old and 10%
of all HD cases are juvenile Huntington
disease which means people die usually I
think 20 and younger so just recently um
princess Carley is what we call her you
could see her on YouTube um she joined
our HD angels in heaven at the age of 13
and she was an inspiration to us all and
I share all my stem cell research hope
with my HD friends and tell them to stay
positive and keep fighting so thank you
CR for supporting the HD research to
fight HD you give help to thousands of
HD families and hope to the National
Youth Alliance for a bright and sunny
future thank
[Applause]
you now you all know why we work so hard
thank you Sherry thank you for your
courage and for sharing your story with
us your work your words your story they
Inspire us and highlight the urgency of
moving quickly and safely to clinical
trials