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