[Music]
[Music]
that they changed everything the
neurologist said Seth your test results
came back positive for Huntington’s
disease I blocked out everything the
neurologist had to say after that
because I knew I was destined to slowly
deteriorate both physically and mentally
just like my mom now minutes before this
I was your typical 20 year old college
sophomore happy with lots of friends I
loved playing soccer and basketball and
going out on the weekends but especially
going out on the weekends but in my head
I couldn’t help but think that I just
tested positive for Huntington’s disease
now deep down inside I knew I already
had it but this was just confirmation
that it was for real and I was in shock
so what is Huntington’s disease which is
also known as HD I’ll paint you a
picture my mom had poor balance and
wobbly movements often tripping and
falling over we had neighbors who
thought she was just just a drunk she
had these severe mood swings for one
minute she was fine and then the next
she was frustrated or angry or depressed
and finally there was this cognitive
decline which results in short-term
memory loss concentration losing loss of
concentration decision-making among
other things HD is a rare neurological
genetic disease as if someone has ALS
Alzheimer’s and Parkinson’s all at once
and the worst part about it is that
there is no cure once a person starts
showing symptoms the average lifespan is
10 to 20 years my mom was slowly dying
of this disease was only 49 years old
and there was nothing I could do about
it besides watching her clock slowly
tick down I first learned about my mom’s
condition when I was about 15 years old
but like most teens I was too focused on
the present to worry about the future in
fact I felt like I was in denial and I
was often embarrassed out in public with
my mom do to her slurred speech and
wobbly movements and would even stay at
my friend’s houses just to get away it
wasn’t until I went to college that it
really hit me I have a 50/50 chance of
inheriting this disease and ending up
one day just like my mom a simple flip
of a coin heads I win tails I lose I
just didn’t know what side it was going
to be because I had not been tested yet
like most people and families who carry
a fatal genetic disease so although I
wasn’t ready to get tested I felt like I
still needed to do something so my
freshman year in college my friend Max
and I decided to put on his throne
through Baskerville charity event called
hoops for Huntington’s to raise money
and awareness for the disease you could
say this was my way of coping not
thinking about testing and ultimately
just keeping busy but I couldn’t help
but still think about it because of the
impact it would have on my future no
matter which side of the coin would come
up do I want to get married and have
kids what about buying a house or
traveling around the world what about my
career plans these were things that were
constantly on my mind and I needed to
know it was mentally draining on a daily
basis and I was tired of living with the
unknown so I got tested
I thought I was prepared for the news
but in fact I wasn’t because minutes
before going into that exam room
I was just Seth but now I was HD Seth
and I had to figure out how HD Seth
wanted to live his life one thing I knew
I couldn’t tell my family my mom was
still alive at the time and I knew she’d
feel terribly guilty knowing she passed
along this disease to her son my dad was
a caregiver for my mom and I didn’t want
to feel like another burden to him and
then there was my older sister and
because it’s a genetic disease I didn’t
want her to feel pressured to also get
tested so I told a few friends who were
very helpful and supportive throughout
the process I had one friend who came
with me for my results and the rest I
told on my hour-and-a-half car ride back
to college so without knowing it I put
myself in this genetic disease closet I
shut the door and I hid my results for
my family and most of the world six
months one year two years went by I was
still that typical college kid but now I
was more actively involved in the HD
community I joined a few HD
organizations I was raising money and
awareness and supporting young people
and families impacted by the disease and
everyone just assumed I was doing this
because of my mom my senior in college
in fact the day before my last semester
my good friend Jake unexpectedly died in
an accident in his high school yearbook
there’s this quote that he embodied so
much his parents put it on his headstone
this quote said live as if you were to
die tomorrow learn as if you were to
live forever so I thought how can I keep
Jake’s memory alive by living my life to
the fullest
now a short time after this I lost
another friend Megan who had a version
of HD and passed away at the age of 26
now Megan was very open about her story
and was doing as as much as she could to
raise money and awareness for the
disease so I thought holy crap I just
lost two friends gone way too soon why
do I need to continue to hide my HD
results despite Megan and Jake’s
circumstances their positive outlook on
life inspired me this was my turning
point to finally come out of that
genetic disease closet and go from being
HD Seth to just plain old Seth but first
I had to tell my dad and my sister I
decided to tell them separately and I
started with my dad I vividly remember
walking into the living room sitting on
the couch across from him and telling
him I had something important to tell
him after a long silence he looked at me
and said alright Seth what is it what do
you need to tell me dad
I tested positive for Huntington’s
disease
he then just looked at me and said okay
okay that’s all you’re gonna say he then
said Seth researchers are making great
progress and soon enough there’s going
to be a cure now I told my dad I didn’t
want mom to know about this so we both
agreed not to tell her but it was so
reassuring to know that my dad was gonna
stick by my side just like he did with
him with my mom so one down one to go
I knew telling my sister was going to be
easy but in fact I was wrong after
telling her she had a few questions but
was very loving and supportive but was
shocked her most like most people was
that I kept this a secret
for two whole years now I realized this
it was such a big mistake
and if I could go back in time I would
tell my dad my sister from day one
because after telling them it was a huge
sigh of relief and I felt like a weight
just lifted off my shoulder I felt like
a new person a new Seth I was motivated
inspired and hopeful and I knew what I
wanted to do in life which was share my
HD journey and be a mentor to young
people who face some type of adversity
in life whether it’s HD related or
another challenging circumstance helping
young people is what makes me happy and
who I am today
just Seth not long after telling my dad
and my sister I got a tattoo and here it
is
live as if you were to die tomorrow
learn as if you were to live forever
this is my constant reminder that life
is too short and to take nothing for
granted
a few years ago my mom lost her 17-year
battle to this devastating disease she
was and still is my inspiration brave
and always had a smile on her face to go
along with her sense of humor this
journey is my journey but it’s not
unique I’m one of millions of people who
have to decide whether or not they want
to get tested for genetic disease if you
happen to be one of them remember that
this is and should be a very personal
decision because of the impact it will
have on your future now having been
there done that there are three things
I’ve learned that I would like to share
first if you can work with the genetic
counselor and a neurologist who
specializes in this field do it with
their knowledge it will make the process
a lot more manageable and easier not
easy but easier the second thing
talk to your family and close friends
about it from day one I realized after
telling my dad my sister I was just more
comfortable and I didn’t have to hide in
that genetic disease closet and finally
when things get tough remember that each
day is a new day and you have the
opportunity to make the most of it we
all have choices in life we have to make
some are easy some are hard the harder
they are the more support we need to
reach out and ask for it find your motto
find your reason and hey maybe get a
tattoo
thank you
[Applause]
[Music]
[Music]
[Music]
that they changed everything the
neurologist said Seth your test results
came back positive for Huntington’s
disease I blocked out everything the
neurologist had to say after that
because I knew I was destined to slowly
deteriorate both physically and mentally
just like my mom now minutes before this
I was your typical 20 year old college
sophomore happy with lots of friends I
loved playing soccer and basketball and
going out on the weekends but especially
going out on the weekends but in my head
I couldn’t help but think that I just
tested positive for Huntington’s disease
now deep down inside I knew I already
had it but this was just confirmation
that it was for real and I was in shock
so what is Huntington’s disease which is
also known as HD I’ll paint you a
picture my mom had poor balance and
wobbly movements often tripping and
falling over we had neighbors who
thought she was just just a drunk she
had these severe mood swings for one
minute she was fine and then the next
she was frustrated or angry or depressed
and finally there was this cognitive
decline which results in short-term
memory loss concentration losing loss of
concentration decision-making among
other things HD is a rare neurological
genetic disease as if someone has ALS
Alzheimer’s and Parkinson’s all at once
and the worst part about it is that
there is no cure once a person starts
showing symptoms the average lifespan is
10 to 20 years my mom was slowly dying
of this disease was only 49 years old
and there was nothing I could do about
it besides watching her clock slowly
tick down I first learned about my mom’s
condition when I was about 15 years old
but like most teens I was too focused on
the present to worry about the future in
fact I felt like I was in denial and I
was often embarrassed out in public with
my mom do to her slurred speech and
wobbly movements and would even stay at
my friend’s houses just to get away it
wasn’t until I went to college that it
really hit me I have a 50/50 chance of
inheriting this disease and ending up
one day just like my mom a simple flip
of a coin heads I win tails I lose I
just didn’t know what side it was going
to be because I had not been tested yet
like most people and families who carry
a fatal genetic disease so although I
wasn’t ready to get tested I felt like I
still needed to do something so my
freshman year in college my friend Max
and I decided to put on his throne
through Baskerville charity event called
hoops for Huntington’s to raise money
and awareness for the disease you could
say this was my way of coping not
thinking about testing and ultimately
just keeping busy but I couldn’t help
but still think about it because of the
impact it would have on my future no
matter which side of the coin would come
up do I want to get married and have
kids what about buying a house or
traveling around the world what about my
career plans these were things that were
constantly on my mind and I needed to
know it was mentally draining on a daily
basis and I was tired of living with the
unknown so I got tested
I thought I was prepared for the news
but in fact I wasn’t because minutes
before going into that exam room
I was just Seth but now I was HD Seth
and I had to figure out how HD Seth
wanted to live his life one thing I knew
I couldn’t tell my family my mom was
still alive at the time and I knew she’d
feel terribly guilty knowing she passed
along this disease to her son my dad was
a caregiver for my mom and I didn’t want
to feel like another burden to him and
then there was my older sister and
because it’s a genetic disease I didn’t
want her to feel pressured to also get
tested so I told a few friends who were
very helpful and supportive throughout
the process I had one friend who came
with me for my results and the rest I
told on my hour-and-a-half car ride back
to college so without knowing it I put
myself in this genetic disease closet I
shut the door and I hid my results for
my family and most of the world six
months one year two years went by I was
still that typical college kid but now I
was more actively involved in the HD
community I joined a few HD
organizations I was raising money and
awareness and supporting young people
and families impacted by the disease and
everyone just assumed I was doing this
because of my mom my senior in college
in fact the day before my last semester
my good friend Jake unexpectedly died in
an accident in his high school yearbook
there’s this quote that he embodied so
much his parents put it on his headstone
this quote said live as if you were to
die tomorrow learn as if you were to
live forever so I thought how can I keep
Jake’s memory alive by living my life to
the fullest
now a short time after this I lost
another friend Megan who had a version
of HD and passed away at the age of 26
now Megan was very open about her story
and was doing as as much as she could to
raise money and awareness for the
disease so I thought holy crap I just
lost two friends gone way too soon why
do I need to continue to hide my HD
results despite Megan and Jake’s
circumstances their positive outlook on
life inspired me this was my turning
point to finally come out of that
genetic disease closet and go from being
HD Seth to just plain old Seth but first
I had to tell my dad and my sister I
decided to tell them separately and I
started with my dad I vividly remember
walking into the living room sitting on
the couch across from him and telling
him I had something important to tell
him after a long silence he looked at me
and said alright Seth what is it what do
you need to tell me dad
I tested positive for Huntington’s
disease
he then just looked at me and said okay
okay that’s all you’re gonna say he then
said Seth researchers are making great
progress and soon enough there’s going
to be a cure now I told my dad I didn’t
want mom to know about this so we both
agreed not to tell her but it was so
reassuring to know that my dad was gonna
stick by my side just like he did with
him with my mom so one down one to go
I knew telling my sister was going to be
easy but in fact I was wrong after
telling her she had a few questions but
was very loving and supportive but was
shocked her most like most people was
that I kept this a secret
for two whole years now I realized this
it was such a big mistake
and if I could go back in time I would
tell my dad my sister from day one
because after telling them it was a huge
sigh of relief and I felt like a weight
just lifted off my shoulder I felt like
a new person a new Seth I was motivated
inspired and hopeful and I knew what I
wanted to do in life which was share my
HD journey and be a mentor to young
people who face some type of adversity
in life whether it’s HD related or
another challenging circumstance helping
young people is what makes me happy and
who I am today
just Seth not long after telling my dad
and my sister I got a tattoo and here it
is
live as if you were to die tomorrow
learn as if you were to live forever
this is my constant reminder that life
is too short and to take nothing for
granted
a few years ago my mom lost her 17-year
battle to this devastating disease she
was and still is my inspiration brave
and always had a smile on her face to go
along with her sense of humor this
journey is my journey but it’s not
unique I’m one of millions of people who
have to decide whether or not they want
to get tested for genetic disease if you
happen to be one of them remember that
this is and should be a very personal
decision because of the impact it will
have on your future now having been
there done that there are three things
I’ve learned that I would like to share
first if you can work with the genetic
counselor and a neurologist who
specializes in this field do it with
their knowledge it will make the process
a lot more manageable and easier not
easy but easier the second thing
talk to your family and close friends
about it from day one I realized after
telling my dad my sister I was just more
comfortable and I didn’t have to hide in
that genetic disease closet and finally
when things get tough remember that each
day is a new day and you have the
opportunity to make the most of it we
all have choices in life we have to make
some are easy some are hard the harder
they are the more support we need to
reach out and ask for it find your motto
find your reason and hey maybe get a
tattoo
thank you
[Applause]
[Music]
[Music]
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