next speaker is BJ Wow BJ is from Apple
Valley Minnesota and a recent graduate
from the University of San Tomas instant
pool with a marketing degree BJ's mother
was diagnosed with Huntington's disease
14 years ago and currently lives in a
county assisted group near their family
in apple valley BJ and his older sister
Emily I dress for Huntington's and have
made the decision to focus their lives
on caring for their mother raising money
for medical research towards treatment
and for spreading awareness about the
needs for HD families 13 years ago BJ
knees fan began began the twin cities
who pathan that an Lea now attracts 500
participants and raises over 45 thousand
dollars every year towards medical
research BJ has been honored by the
Minnesota Timberwolves people don't know
that used to be a good basketball team
as a hero in the making sorry Martha ok
and awarded the Youth Alliance award at
the HDS a annual convention in two
thousand awarded the individual
leadership award by the Minnesota
chapter of hds a in 2006 and he's been
featured in Sports Illustrated march two
thousand of five faces in the crowd
which honors those who represent the
best ideals of sportsmanship please
welcome e enjoy join me in welcoming BJ
how's everybody doing good good at first
I just wanted to thank everybody for
putting on this conference for
decorating for the introduction and for
all you ladies for for telling your
story and also I'd like to thank dr.
Nance she's the one who kind of got me
on board with this so I had to say
what's up doc and thank you very much
for this opportunity I've never been to
Vancouver Canada before so it's been a
lot of fun here me and my dad went and
did the the grouse mountain climb
yesterday so if any of you have a chance
it's a nice little walk and nice little
nature walk really easy give it a try
kind of but it's a lot of fun so if you
have a chance get up there I wasn't
really sure you know who's more excited
for this talk me or my dad he loves to
do public speaking so when he heard that
I had this opportunity I think he was
hoping I'd get ill or something so he
could come up here and represent me and
he probably has a speech ready in the
back pocket but you know I live at home
now which is pretty average after
graduating from college and my dad and
we just kick it but um he's been bugging
me for the past three months ABG working
on that speech you know how's the speech
coming I of course like yeah it's coming
great yeah so I just kind of pushing
them off here and there but you know
it's it's coming together so dad just
sit down and listen
and you know I was originally asked by
dr. Nance you know a couple months ago
hey BJ you want you want to come and
talk in front of some people about being
at risk and I was like yeah sure sounds
fun you know whatever and I come to
think of it it after I said yes I was
like well what am I even talking about
you know what what should I talk about
it's like being at risk and called dr.
Hayden and I was like well what am I
supposed to talk about and he pretty
much is like well just tell your story
so I was like okay I'll just tell my
story I guess and I mean I wasn't really
sure you know what kind of message I
want to send I want to make you guys
laugh I want to make you guys cry do I
want to give you some you know a
powerful message and you know the answer
i came up with is I don't really know
what I wanted to do maybe do a little
bit of both so if you hear something
funny laugh at laugh it makes me
comfortable up here I've never had this
big of a crowd before but you know my
story is you know this is my mom Debbie
you know she was diagnosed she couldn't
be with us here today she's back at home
so I just wanted to put some pictures of
my mom up here makes me more comfortable
so hey mom she wishes she could be here
I wrote up all these notes to I don't
know if I'm gonna even use them but
we'll see you know i was told that to
get up here and talk like you guys are
our group of my friends so that's what
I'm gonna do you know my mom was
diagnosed about 13 years ago I was just
a little guy I was 10 years old she
currently lives right now in a group
home which is a great place for her a
great place for any HD patient you know
it's two miles for my house it's in the
middle of the neighborhood it was opened
up by a lady whose husband actually has
Huntington's and she's like well I don't
want him to have to live in a nursing
home so I'm going to open up this house
and now there's two houses and there's
about four HD patients in each house and
they have great care we can come and
visit her whenever we want it's just a
great place for her and and for us to
who you know can't give that that care
that that's needed at all times my mom
like I said was diagnosed you know I was
ten years old I really I honestly don't
even remember back then you know my
parents came home from the doctor
somewhere and I knew they weren't happy
and I had no idea what was going on my
great my grandpa my great grandma both
passed away really before I knew
anything about honey
tens and I knew that they had it so I
was unaware what was going on you know I
lived a normal life I was a little kid
went to school I played sports I came
home I hung out with the family you know
nothing was wrong with my mom she wasn't
showing symptoms so I was I was pretty
confused and I didn't I especially
didn't know that because she was you
know tested positive for Huntington's
that I of course was at risk too
sometime down the line the words genetic
hereditary meant absolutely nothing to
me so you know I think I don't even
remember when my parents told me that I
was at risk for this disease i think i
was just kind of like yeah whatever just
let me go play outside or something i
don't know what you're talking about but
you know a couple couple months after
you know they were diagnosed you know
one of my parents and i remember who
decided to take us to this thing called
the who pathan it was put on by the
minnesota chapter of Huntington's and it
was for you you guys who don't know what
a who pathan is it's a basketball
fundraiser for Huntington's and people
shoot free throws for five minutes to
see how many they can make just kind of
a fun way to to raise some money and it
wasn't a big event at all he was
probably 50 people and it was me my
sister my dad and a friend and we ended
up you know raising a couple hundred
bucks and on the way home as my dad
tells it because I like basketball so
much I don't know just a coincidence
back then I was like hey Dad you know
can we have a hoop athan and as he tells
it he's kind of thought about it for a
second he's like I don't I don't even
know what to say and he goes sure let's
hold the hoop pathan so we knew
absolutely nothing about running event
we barely know anything about
Huntington's but we decided that we were
going to hold an event and so about two
weeks before we know we planned a date
we booked booked to gym space we printed
off some flyers we told all our friends
and family we got into a gym and we shot
some hoops for a couple hours and you
know when all said and done we really
had no idea what we were doing and at
the end of the day we ended up raising
about six thousand dollars in our first
year so we
we kind of looked at each other after
that were like you know we don't even
know what we did and we just raised six
thousand dollars for this disease so he
better do it again I guess so you know
then an extra came around and we pretty
much did the exact same thing when you
know we told everyone we knew but we
told everybody who came last year to
bring a friend so if everyone came and
brought a friend you know it's got to
get bigger right we added some new
things and it grew in every year for the
last 12 years it's grown and grown and
grown and I mean over the past 12 years
we've raised over a half-million dollars
for HD every year we raised between in
all the past five years we raise between
45 and 50 thousand dollars
I don't know where that is that resort
clicker room ah whatever I was just
going to add them these are just some
pictures this is kind of a picture of a
hoop without a few years ago it's just
kind of how it's set up you know we run
it you know we have a bunch of people
standing around who passed the ball
there's someone shooting and they just
shoot until their arms fall off for five
minutes and it's a lot of fun you know
you don't really know how many you're
going to make and people can bring
pledges either way either forever many
baskets they make or that but the best
part about holding a hoop athan and
having it run is it's a family event you
know we run it pretty much my family my
dad is kind of he kind of did a lot of
the work for the first ten years when me
my sister were smaller and we didn't
really know what to do but over the past
two years he's kind of stepped down and
now me and my sister you know we run the
event my sister Emily she's a couple
years older than I am I have to get a
lot a lot of a lot of credit to my dad
and my sister for for running it a lot
of times I get a lot of credit for this
for this event because my names on it
but you know without them nothing would
ever happen so I'm just got to give a
little shout out to my sister so she
knows that I think she does something
but uh you know we do we do what we want
it's like a family run business so every
year you know we we think of it as just
a lot of fun we do what we want and you
know the biggest thing is is we keep
what works and we try and add new things
whatever doesn't work we get out of
there but but you know it's a lot of
friend we get a lot of our close friends
the volunteer they get involved with HD
they think they're you know hey I'm
helping you so they feel good about
themselves and it comes together and you
know the best part about it is we
probably put in about you know three to
four months of work you know just
preparing Flyers t-shirts you know all
that kinds of that stuff and it's kind
of a pain in the butt sometimes but when
you come to the event and you see people
with Huntington's put a smile on their
face for three to four hours because
they know people out there care about
them and want to stop this disease you
just can't help but smile and it makes
it worth every second of the work doing
it and you know to see my mom come and
have all these friends and family give
her hugs that usually don't get a chance
to see her it just it makes it all worth
worth every bit of time you put into it
so what you know kind of i'm talking
about this who pathan you guys may not
even know what i'm talking about but you
know the biggest thing is for our event
we use we use the who Pathan or our
fundraisers that we hold as as hope you
know kind of like katie was saying we
all need hope that one day this disease
is going to be here one day where we're
not going to have these conventions
because we're not going to need to find
it here that Kier is going to be here
and we'll just be having a party
somewhere or something like that but the
biggest thing that I've realized is that
that word hope it it costs money you
know without money we don't have
researchers without researchers we don't
have a cure so kind of what I wanted to
say is we all need to do more to find
that find that hope and give hope you
know if we're a family out there or we
are an individual out there at risk or
caregiver know we all need to do
something you know I know a lot of you
guys out there might do something now
but a lot of you may not and you know if
your family start an event it doesn't
have to be anything great you don't have
to raise fifty to a hundred thousand
dollars start something it doesn't have
to be a hoop thon it could be a walk or
on you could sell coupon books you can
have a family dinner it can be anything
but for all your researchers and doctors
out there we need you just as much you
know we of course needs you to find a
key
but we need you to provide us hope that
what you're doing is is you know
progressing and you're you're finding
things and you know things are looking
up and just inspire us to raise this
money and tell us that it's going to
good use we all kind of need to to stick
to what we're good at i know i'm not
going to find it here i'm not smart
enough at all I've talked to a lot of
researchers out there and every time I
get done with a conversational say god
I'm stupid but one kind of story house
it's tell real quick we we had the
chance while you know four years into
our who pathan to meet and one of the
doctors dr. Janet Dubinsky who works for
the University of Minnesota and my
family goes down there and we're all
excited you know we're going to talk to
this doctor and she's all she's all
really excited and she pulls out that
the human brain and starts just rambling
on all these words I don't understand so
about two minutes in all I really
understood is hey how are you guys and I
i fell asleep I'm not gonna lie my
parents tapped me on the shoulder before
he left and it's like time to go I was
like okay good so what I realized is I'm
not finding a cure that's you know your
guys job out there but you know what i
am here to do is I'm here to raise money
and I'm here to you know try and get
other people to raise money because
without that money you know we don't
have you guys and without you guys you
know we don't have a cure and we don't
have a hope you know to look to look
forward to something so you know I just
I really just want to say you know
families and people out there if you're
at risk it I know a lot of people out
there who are afraid to meet there at
risk or they're afraid to to really
admit hds in their lives because I don't
know they're scared or something but but
not admitting it I don't really think
does anything for anybody it's just
you're not going to do anything about it
if you just kind of hold back and
pretend nothing's there we all need to
get out and do something and I know a
lot of people who who admit that it's in
their lives but are afraid to do
something about it they're like well you
know I don't know what to do or you know
I'm not sure how you know I can help or
how my little fundraiser how I raised
five hundred dollars is going to is
going to help but everyone's got to do
something no one's going to make fun of
you for holding an event
for a disease that affects you if you're
trying to do something good with it it
doesn't matter what it is it doesn't
matter if it raises a dollar it doesn't
matter if it raises you know ten dollars
it's it's spreading awareness for
disease it's it's it's raising money and
you know every penny counts is is really
the key so so get up and do something
you know if you're if you're a doctor
out there you know keep doing your job
keep telling us positive things you know
find a cure do whatever you want to do
but uh you know people at risk we need
you guys you guys are your you know our
life savior if we have this disease and
I'm at risk so I've chosen not to test
and i don't know if i have this but you
know for people out there you guys need
to save our lives so i don't know how
much you think about that but you know
every day you're at work you know monday
through friday i don't know your hours
but you know our lives are in your hand
and you know everything you do we
appreciate all the hard work and you
know keep keep pushing forward and I
forgot to tell you but on the ends of
each your table are like a little stack
of business cards there with my contact
information so if you're on the end or
the end of a row I kind of threw them
all over the place just pass those down
and just put in your pocket and you know
what I wanted to do really with this
message is not only tell my story you
know I'm not preaching it's the right
story it's the right way to live or
anything like that but uh I just I've
been told to tell my stories that's kind
of what I'm doing but what what I want
to do now is I kind of want to look at
you guys and you guys all have my
contact information but I want to hear I
want to hear your guys a story we all
need to to work together and to share
what's going on out there you know
around the world a lot of the times I
forget that you know the Huntington's
affects the whole world sometimes I just
think it's it's right in my community or
in the hds a where I'm a part of but I
want to hear you know what you guys are
doing I want to hear your ideas so many
from based on our who Pathan just it's
we've actually other people have come in
they've been at risk or their family and
their they kind of look at each other
and they're like well why can't we do
something too and you know off that you
know there's a family there that kind of
did that and they ended up having their
own family fundraiser where they just
they live in a small city and they hold
a dinner and end up raised about 20 to
30
a year just by inviting all their
friends just by coming to a fundraiser
and saying why can't we do that to a
golf tournament a walk around have also
come out of it I had a buddy who goes to
to school at the University of North
Dakota and he calls me the spring and
he's like hey BJ I'm in a class and I
gotta put on a fundraiser I want to do a
hoop thought I was like well that's cool
he's like well what do I do and I'm like
well I don't know what do you want to do
he's like well I just thought you'd tell
me exactly how to run a fundraiser I was
like well you know there's no magic
formula and we started throwing out
ideas and he ended up coming up with an
event that that is totally different
from what we do and what he was familiar
with but they ended up you know first
year getting 50 people to come to the
event and raising four grand and that's
just someone who's not really even
affected it's it's just someone who
wanted to do something and we all need
to start you know doing everything we
possibly can if it's little or if it's
big so really what what what I like to
do is you know everyone please send me
an email give me a call introduce
yourself to to me at the conference I'd
love to hear what you guys are doing if
you're a researcher don't get too
scientific just give me a thumbs up or
something but if you're not if you're if
you're at risk your family member come
come tell me you know I'd love to share
ideas I'd love to help you think of
something and I'd love to get your idea
so I can go and spread the word back in
Minnesota and into whoever whoever I
know so please do that I had all these
notes and I didn't even use them so just
um I hope you guys enjoy the rest of
your conference thank you very much for
letting me have the opportunity to speak
with you today and let's let's find a
cure
Thank You BJ thank you for inspiring us
to action I think as scientists I think
we could just got to see our big record
is to give any talk and make sure you
don't fall asleep so that's what we
would say is a good step forward