Episode Transcript
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Speaker 1 (00:01):
This week on iHeart Sincy, We've got another look today
at the Tristators making a real difference in the lives
of their neighbors, friends and family. Buddy Walk Cincinnati twenty
twenty four is just a couple of weeks away. It's
a celebration of those who live with and love someone
who has Down syndrome. It raises crucial dollars for area
programs to help individuals and families with the support, the resources,
(00:24):
the therapies that they need to get the most out
of life.
Speaker 2 (00:27):
The life expectancy has exponentially gotten.
Speaker 1 (00:30):
Hired Today Christy Vincent from the Down Syndrome Association of
Greater Cincinnati as my guest, raising awareness of the extraordinary
lives of people with Down syndrome and sharing information about
the enormous free party there's growing in September at their
Buddy Walk fund raising event now on iHeart Sinsey with
Sandy Collins. So let's get to it. Christy Vincent is
(00:51):
the communications coordinator for DSAGC, that is the Down Syndrome
Association of Greater Cincinnati. She took my team's call on
Wednesday to talk about the upcoming Buddy Walk. Let's introduce
everybody to the Down Syndrome Association of Greater Cincinnati.
Speaker 3 (01:09):
Sure well, thanks for having me.
Speaker 2 (01:12):
My name is Christy Vincent and I work at the
Down Syndrome Association of Greater Cincinnati, and since nineteen eighty one,
our mission has been to empower individuals with Down syndrome,
educate families, enhance communities, and together we celebrate the extraordinary
lives of people with Down syndrome. And we fulfill our
(01:34):
mission through hundreds and hundreds of programs a year, lots
of support for families of all ages and stages. We
provide resources, advocacy of course, and a lot of outreach so.
Speaker 1 (01:49):
You're connected with new families when they get the diagnosis.
Speaker 2 (01:55):
Whether it's a prenatal diagnosis or diagnosis at birth. We
do a lot of outreach in the hospitals making sure
that doctors and nurses are equipped to handle delivering a diagnosis,
and then we provide our materials that they can give
families once they give that diagnosis. And then families reach
out to us and we meet with families. Our Early
(02:17):
Matters coordinator often visits at home or in the hospital,
bringing them a welcome basket explaining our services, but also
what is available here in Greater Cincinnati.
Speaker 3 (02:29):
We have a lot of wonderful resources here.
Speaker 1 (02:31):
You said it can be diagnosed prenatally or after birth.
This is something that they don't regularly test for prenatally.
Speaker 2 (02:39):
There is testing you can do before birth, but sometimes
different markers may get missed or they may not be testing.
Speaker 1 (02:46):
So you may not just test for it if you
don't think it might be a possibility. And then when
the baby is born, then the typical characteristics are seen
in the face and that leads the doctor to determining
what's happening. When I was growing up, you know, the
life expectancy of people with Downs syndrome was very short.
(03:11):
And doing some research for this show, I see that
it's gone from like the average age of twenty five
to now sixty years old. That is remarkable, Chrissy, it's amazing.
Speaker 2 (03:24):
When our organization first started, you write, the life expectancy
was very low, and with medical advancements, with research, with
just the support of community and advancements and the education
process and all of that, the life expectancy has exponentially
gotten higher. In fact, my aunt who had Down syndrome,
(03:45):
she lived a wonderful life and lived to be sixty six.
So we have actually just hired an aging specialist because
the life expectancy is increasing and we want to be
able to serve families throughout their entire lifespan. So our
aging specialist really focuses on families thirty five and up
and making sure that they have all the resources they
need to kind of live along in healthy life.
Speaker 1 (04:06):
I don't want to get down too far into the
weeds with the medical stuff because I'm not an expert,
and I don't think I think you're a medical doctor,
but I do want to kind of give an overview
that this is a chromosomal condition, and I understand from
the CDC it's about five thousand babies born each year.
Do they have any idea why these chromosomes misfire? If
(04:30):
you will, Do they have an idea of what is
happening with that chromosome twenty one that seems to be
the basis of this condition.
Speaker 3 (04:42):
That's a really good question.
Speaker 2 (04:44):
Medically, I don't know the answer to that, but we
always say down syndrome affects all people, and we see
that in our community. We have a very diverse community,
and so medically, I do not know the answer.
Speaker 1 (04:59):
Yeah, yeah, well I couldn't find it either, So that's
the that's the issue. I mean, I think it's unknown.
There seems to be like a spectrum of ability for
those with Down syndrome. Intellectual disability comes with it, delayed
development and the characteristic facial features. It seems that some
people can function, are very high functioning, and some people
(05:21):
need much more help. Are people with Down syndrome able
to actually live on their own nowadays? When I was
grown up again, they weren't. They needed full time care
throughout their life. So can they live now on their own?
Speaker 3 (05:36):
Yeah.
Speaker 2 (05:36):
In our organization, we typically don't use high functioning versus
low function. We feel like people have different ability. So
for example, somebody might be really really good at one
thing and may need a little help on another thing.
So we say, you know, everyone is unique in there,
each and every way. In terms of living on their own.
We have a lot of adults that live on their own.
Speaker 1 (05:56):
Now, that's great to hear, that's great.
Speaker 3 (05:59):
Yeah, yeah, yeah.
Speaker 2 (06:00):
In fact, we just had a young man he's been
in our organization since he was a baby, and he
just moved out on his own. He's got his own
apartment there are a lot of supports for people that
live on their own with Down syndrome, So whether that's
having staff come in and work with them. We also
are also now with technology. There's smart houses, so things
(06:23):
can be programmed and people can utilize that technology. But
independent living is really an important part of kind of
a healthy lifestyle. And we like to say independent living
doesn't necessarily mean moving out and getting your own apartment
or your own house. That can be living independently within
your own home. So whether that's helping you know, mom
(06:46):
and dad cook dinner, cooking dinner for yourself, or getting
dressed on your own. So when we talk about independent
living with our programs and our resources, we kind of
tailor it to where the individual is in their life.
To your original question, yeah, we have a lot a
lot of people that live on their own. We've got
married couples that live on their own, and we're starting
(07:06):
to see that a lot more.
Speaker 1 (07:07):
Christy Vincent, I'm glad you're here to answer all these questions.
She's the communications coordinator for Down Syndrome Association of Greater Cincinnati.
They've got a buddy walk coming up. We'll get to
that here in just a minute. And tell you how
you can be a part of it. So, Chrissy, people
that have Down syndrome also have medical issues, and that
is from what I can understand, is what caused them
(07:28):
to have a higher mortality rate, which is now something
that is being addressed. So they had like heart issues,
thyroid issues. What other kinds of medical conditions does someone
with Down syndrome often have?
Speaker 3 (07:44):
That is a good question.
Speaker 2 (07:46):
Again, I'm not a medical expert, but the prevalence of
heart conditions is very high in our community, so we
see a lot of little ones. And again, medical advancements
have come a long way, so that's helping with the
life expectancy.
Speaker 3 (08:01):
Again, research is coming a long way, so.
Speaker 2 (08:04):
We know a lot more about Down syndrome than we
did in the nineteen eighties when our organization was founded.
Right now we're learning a lot more with our aging
specialist about the dementia aspect and how that affects individuals
with Down syndrome. But yeah, that's a great question, and
you know, we've come a long way and they's still
(08:25):
a long way to go, but we're making good strides.
Speaker 1 (08:28):
Christy, what do you think there are a common misconceptions
of folks with Down syndrome. Have we covered them so far?
Is there anything else?
Speaker 3 (08:36):
I think Yeah, I think we've covered a lot of it.
Speaker 2 (08:38):
But I think the main thing we always say is
we celebrate differences.
Speaker 3 (08:43):
So everyone with Down syndrome is.
Speaker 2 (08:45):
Unique in their own way, and we really try to
make sure through our organization and our efforts that we
meet the person where they.
Speaker 3 (08:54):
Are, especially in the school system.
Speaker 2 (08:57):
We have a school age coordinator that goes in and
works with kids in the school system and she'll do observations,
and we really want to make sure that the education
that they're receiving is what's best for them and make
sure they have a good school outcome. And especially we
want to make sure all the little ones get the
services they need as well. So really it's just meeting
(09:18):
the person and the family where they are.
Speaker 1 (09:20):
So services like if they have low muscle tone or
if they have problems with that.
Speaker 2 (09:25):
Yeah, we have wonderful therapists in our area. Cincinnati is great.
We have the Thomas Center for Down Syndrome affiliated with Children,
and we also have a lot of other places around
Cincinnati where they can go and get physical therapy, occupational therapy,
speech therapy. We actually partner with a lot of therapists
in our program, so we have we call one of
them play with the Pro, so professional therapists come in
(09:48):
and can talk with families about their therapy goals and
things like that.
Speaker 1 (09:51):
Sounds like there's a lot of hope these days, a
lot of help, a lot of opportunity, and a lot
of support and that is great through the Down Syndrome
Association of Greater Cincinnati. Talking with Chrissy Vincent, who's the
communications coordinator. So we have a Buddy Walk here to
celebrate people with Down syndrome. Tell me about that and
how you raise money and what it's for sure.
Speaker 2 (10:13):
So the Buddy Walk is our organization's largest fundraiser of
the year. Our goal this year is to raise seven
hundred thousand dollars and that really funds our mission throughout
the year. So when I talk about, you know, the
hundreds of programs we have, the outreach, the advocacy, the support,
that's what the money is going towards. And really, like
(10:33):
you said, you said it perfectly, it's a big celebration
for our loved ones with Down syndrome. We had we
have about fifteen thousand people that come out and support wait.
Speaker 1 (10:42):
Wait, wait, wait, fifteen thousand.
Speaker 3 (10:45):
Fifteen thousands, This is huge.
Speaker 2 (10:47):
Okay, it's a huge event down at Sawyer Point. And
honestly I get chills even talking about it. When you
walk in and see the amount of people that support
our community and our loved ones with down syndrome overwhelming.
But like you said, it's a huge party down it's
Toyer Point, so it's.
Speaker 1 (11:04):
More than a walk, right, it's a mile walk. But
what there's all sorts of other things happening.
Speaker 2 (11:09):
Yes, so we say it's a slow stroll since we
have so many people. It's a slow stroll around Soyer Point,
one mile stroll. But we always say it's your day,
so walk your way. If you don't want to do
the whole mile, that's okay. They're just entertainment at every route.
So we have cheer groups. We've got one of our
(11:30):
adults of down syndrome is a DJ, so he's down there.
We've got dance groups, we have Circus Mojo, We've got giveaways,
bounce houses, inflatables, face painting. It's just a huge party,
free food and drinks for all those who come. So
just a big celebration to show up and support so
to come.
Speaker 1 (11:50):
Is there an admission cost? Is there a registration that
you have to sign up and make a donation? How
does this work, Chrissy.
Speaker 3 (11:57):
Sure, anybody's welcome to come and join us.
Speaker 2 (12:01):
We have online it's Buddy Walksincy with a y dot
org and you can register a team or just yourself.
If you head registered by August fifth, you get a
free T shirt.
Speaker 3 (12:12):
There's no registration fee.
Speaker 2 (12:15):
Really, we just want people, if they have it, the
ability to give donations.
Speaker 3 (12:20):
But it's a free event.
Speaker 2 (12:21):
And it's a big celebration just to show your support.
Speaker 1 (12:25):
That's a pretty unusual tech there, Chrissy. Must get some
corporate sponsorships as well.
Speaker 2 (12:29):
We have a great corporate sponsor. We have wonderful sponsors.
This year our walk is presented by P ANDNG and
so they are wonderful. They come down at the event
and do a lot of giveaways.
Speaker 3 (12:42):
And they're there.
Speaker 2 (12:43):
They're very hands on and supportive.
Speaker 1 (12:46):
If you're interested in this Buddy Walk for the down
Syndrome Association of Greater Cincinnati, you can go to their
website and tell us more about how to find it
and how to get started.
Speaker 2 (12:58):
Sure, so the Buddy Walk web site is Buddy walks
and c ci NC why dot org. It has all
the information about the day of the event. There'll be
a big map where you can kind of see where
everything's located.
Speaker 3 (13:12):
And then from there you can learn more.
Speaker 2 (13:13):
About our organization too, and we have a lot of
volunteer opportunities. So if you come down to the Buddy
Walk and you have a great time and you want
to further support our organization, there's definitely ways to do so.
Speaker 1 (13:26):
Christy, one of the easiest ways I used to love
to raise money was to ask listeners of whatever radio
station I was working on to go find your change
jar and just bring it. You know, you're not going
to miss the money. Whatever. If I tell people that
they can bring their coins, well, that throw a wrench
in your works. Would you be prepared to accept, you know,
(13:49):
pounds of donations from people?
Speaker 2 (13:51):
Of course, no donation is too small and it all
goes back to our families, and so.
Speaker 3 (13:58):
We take change, we take dof do we take credit cards.
Speaker 2 (14:01):
Anyway you want to donate, even if it's just your time,
we'll definitely.
Speaker 1 (14:05):
Take it because there's a lot of money in those Sometimes.
Speaker 3 (14:08):
You know you're not wrong, You're not wrong, no.
Speaker 1 (14:12):
So the Buddy Walk. What is the date.
Speaker 2 (14:14):
It is Saturday, September the seventh, and we're down at
Sawyer Point.
Speaker 1 (14:19):
Big open party you're invited to at Chrissy Vincent. Thank
you so much. The communications coordinator from the down Center
Association of Greater Cincinnati.
Speaker 3 (14:27):
Thank you so much, Sandy. We appreciate your support.