Kristen Hagopian Show - 09 03 25

Episode Transcript

Speaker 1 (00:03):
Hey, everybody, Welcome to the Christen Agopian Show. Shout outs
from everybody here in Studio B as we connect with
our two hundred plus stations coast to coast via biz
Talk Radio and the BBS Radio Networks. Greetings to you all.
This week's show is brought to you by our caring
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(00:24):
is fighting the effects of today's substance abuse epidemic. It
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and if someone you care about needs help, pick up
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hundred nine three two four zero a two. That's eight
hundred nine three two four zero a two. I am

(00:46):
hearing from listeners that have actually shared that number with others,
and it's helping. I could not be more happy to
hear it. That's why we're gonna plug this every week.
Help the ones you love put that chapter behind them.
Eight hundred nine three two zero a two. Hate guys,
Another gorgeous week here in September. The kids are officially

(01:07):
in school. This summer flew by. I am freaking out.
It is really quite something and I hope everybody had
a fabulous Labor Day. It was fun. It was great
having a long weekend. The kids, after what three grueling
days of school.

Speaker 2 (01:21):
Had a day off.

Speaker 1 (01:22):
Oh and this was fun. On Facebook, I had to
share this. Did you hear the one about the mom
who was so concerned with making sure her daughters was
relatively stress free that she just naturally assumed, without looking
at the calendar that both she and brother had a
half day that Friday before Labor Day. All right, so

(01:45):
your daughter goes off to school for a half day.
You drive a cool kid to school and it's completely
shut down and deserted because it was closed that day.
I think I saw tumbleweeds as well as as well
as easily a half dozen or so other parents in
their Thank God, but they had like you know, they're
shielding their eyes. Nobody see me. I made a mistake.
My car, the blue Bomber, the blue station Wagon. It

(02:08):
is visible from space. It is utterly unique. Anybody who
sees this car knows that it's Chrysigopian driving it proudly.
I drive this car proudly until I'm doing something stupid,
and then I'm easily recognizable, Like driving my kid to
school on a day where there's no school.

Speaker 2 (02:24):
All right.

Speaker 1 (02:25):
So Robbie is sitting there next to me. He's grinning
at me like I sprung him from Shawshank, all right,
So he's got no problem. He's a happy camper. But
I'm utterly horrified. So thank god he wakes up at
six am, you know, day off for him, and then
I just went, you know, to buy back his trust
in love with breakfast at McDonald's, because that's what the

(02:46):
good moms do. I hope you guys had a happy
labored is what we had family over. We had friends
over hot dogs, carbs. It's all good. I love it.
But one other thing we talked about last week. I
cannot get over how many tomatoes are coming out of
our garden. I cannot get over this. You guys, remember
the movie Attack of the Killer Tomatoes. I thought it

(03:08):
was just a corny movie idea, and now I realize
completely and utterly that it was written as a legitimate
cry for help by the spouse of a gardening enthusiast.
Victor's so good at this garden, you guys, you've seen
the pictures on Facebook. The tomato plants are taller than
his head. These tomato plants are six feet and they're delicious.

(03:32):
These tomatoes, they're organic and they're fantastic. You can't get
these in stores. They're literally pennies each. All of that,
you know, I love, But I needed some good ideas
what to do with those. I made a fantastic batch
of killer sauce. It's so easy to make this sauce,
you guys. You just seed them, you put them in
the food processor till they're all puried, and you boil

(03:54):
them up real slow and low with a bunch of
garlic and salt and pepper and some basil. Even I
can do it, all right. I have many fine qualities,
and I'm a decent cook, but not an over the
top great cook. Even I could make this sauce. So
we had I'm not kidding you, you guys. I'm getting about
twenty pounds of tomatoes every weekend that I have to
do something with. So we've been making sauce. Last weekend.

(04:17):
Made a fat batch of sauce, absolutely fabulous, and I
had another eighteen pounds of monster killer tomatoes, and I
was lacking ideas. I did more spaghetti sauce that day
than I did some chili in the crock pot, and
I had some great ideas from listeners. I had to
share this, so people were all over the place. Roasted
tomato soup. I actually tried this. Nikky sent in that idea,

(04:40):
sent the link to the Food Network. It was fantastic.
People are Let's see. Pam is telling me she makes
gaspacho and roasted tomato soup. You guys got game. Stacy's
telling me Brucehetta. She is so funny. She says she
can actually make brucehetta because it's just cutting and mixing,
no actual cooking. Girlfriend, I'm with you, so, Joy Harvey
said to crockpot, a whole bunch of pasta sauce and

(05:02):
then freeze it. That's what I'm doing, Joy. I've got
a whole freezer full of these Chinese soup containers, you know,
the big you know, the large wanton soups, and I've
got to all you buy those on eBay for next
to nothing. We've got tons of those containers. I literally
have lined the bottom of my deep freezer with those
containers filled with different types of sauce. No meat sauces.

(05:23):
It's all marinaire sauce. It's wonderful good stuff. Sherry is
saying that she just cans them for later. Use good
for you, man. I've never gotten into canning. So many
people talk about that it's a great way to preserve stuff.
I'm too lazy. I've never learned, but people swear by it.

Speaker 2 (05:38):
Go for it.

Speaker 1 (05:39):
Margaret's saying, freeze them all for later, exactly as they are,
you know, the stems, the skins, everything. Put them in
the freezer and when they come out they'll be even
more malleable, which is fantastic. You gotta love that, Heather
is saying, and this was so outside the box. Send
them to school for the teachers. Teachers actually love this stuff.
They're hugely into the guard They're so hands on as

(06:01):
it is. She loves sending those in. I like that
idea very much. Go for the teachers. And Anne Marie
is saying she does her deck tomatoes. She just has
a little deck garden, but she just ends up sending
them not only to friends and family who don't have
as much yard space, but she freezes them. She does
all kinds of sauces, and then she gives them to

(06:21):
local food shelters, which is something that I had not
thought about until this year. So I checked out my
local food shelter, my local kitchen pantry, whatever you call
these things these days, and they were so grateful to
get these tomatoes. You've got a lot of people out there,
and yet there will always be good, hard working people
who could use a little hand. And when it comes

(06:42):
to fresh produce, especially, they can't get their hands on
it quite as easily. And these local, brilliantly run food
shelters and you know, helpful local kitchens whatever you want
to call them, are amazing. I visited one near us
here in Philadelphia, dropped off dozens of pounds of tomatoes,
and it was they were just wonderful about it. Let's see,

(07:04):
dropped off ten pounds of tomatoes to our local food
shelter and they were so grateful for it. They're just
so nice and so well run, all volunteer. You could
eat off the floors and you have a lot of
good people in there that are really benefiting from it.
There's nothing I hate more than wasted food. It makes
me a little crazy. So if you have any kind
of additional produce, think long and hard about giving it

(07:26):
to your local kitchens. Once you're done with the canning.
If you do can, God bless you. Once you're done
making all of your sauces for the year with these organic,
gorgeous tomatoes, you give a few away to neighbors. You
do the gorgeous tomato slices with the basil and the
olive oil. They're so good for you, you guys, and
organic fruits and vegetables. Your body absolutely craves them, So

(07:49):
get them in your gorgeous bodies. And you know we
all work like crazy people. You need as many, you know,
good wholesome organic nutrients running around your body as you can.
These tomatoes are really something else. So I'm here, you know,
the freezing, the cooking, the canning. If you want to
go super lazy like me, have a day where you're
just making sauce in the kitchen, some chili in the
crock pot. You've got tomatoes with maybe some mozzarella and basil.

(08:12):
Later on that night. It's brilliant. How much more time
do we have because I got to cover something else?
Oh tons of time. So after I get all the
tomatoes done, and I'm telling you right now when I
left this morning, there's still easily another easily another twenty
pounds of tomatoes waiting on these vines for me when
I get home. But after I was patting myself on
the back putting this whole little crop of spaghetti sauce

(08:34):
containers in the bottom of my freezer, Victor comes in
with this huge bushel basket of carrots. Oh my god,
and these carrots were unbelievable. These were not the types
of carrots you see in like a little carrot commercial
or on grocery store commercials for their weekly whatever. These
were the most oddly shaped, crazy looking carrots. It was funny.
We were finally joking about it. You know, there were

(08:55):
some that, you know, you hold it up, it looks
like Nixon's peace sign, you have let you know, V's
and you have the ones that look like the kids
were saying they look like doll's legs and you should
put a head on top. It was hilarious. Long story short,
We love growing the carrots. Victor and I are the
only ones that eat them. However, we tapped into this
great resource which tells us if you just treat them
like sweet potatoes, which my kids adore, they'll actually go

(09:19):
down a lot easier. And so I try to recipe
where I slice them down, just grilled them in that.
I didn't grill them what do you call it?

Speaker 3 (09:26):
In the oven?

Speaker 1 (09:27):
I just I baked them really high temperatures. I broiled
them with some brown sugar added that at the end.
They taste a lot like sweet potatoes, enough to you know,
enough to almost kind of fool my kids. You know,
you have them all ground up. If you want to,
you can chop them up. You can also add them
to another food that my kids eat a lot of,
and that's chicken soup. If you have any kind of

(09:47):
carrots that you can cut into tiny small pieces, maybe
puree them. If you puree them, you want to cook
them more like a sweet potato. But if you find
yourself inundated, we had like ten pounds of carrots, you guys,
I'm not kidding, And I find when I freeze them
they don't come out as nicely afterwards, So you want
to use them now. And when we were cooking them

(10:08):
up like a sweet potato, they did phenomenally. A little
extra brown sugar never does anything any harm. And when
you cut it up into soups, the kids will eat it.
Everyone will eat it. It's fantastic. So even if you're
not much of a garden enthusiast, if you find yourself,
you know, happening upon, whether it's through your own garden
or the abundant extra produce of a friend or a

(10:28):
family member or a neighbor, get it in your refrigerator,
get it into your bodies, get it into your kids.
There's nothing like organic produce, guys. It combats everything that's
going on otherwise nutritionally.

Speaker 2 (10:40):
It's a beautiful thing.

Speaker 1 (10:41):
The time is flown, guys, hang out for a minute
a fabulous interview with one of my favorite places on Earth,
Guitar Center.

Speaker 2 (10:47):
Right after this, I'm not too steep, and we are.

Speaker 3 (11:06):
Back with the Christian Negopian Show. And I've been looking
so forward to our next guests because, as the proud
owner of two now adult age children, I was the
cupcake mom, the juice mom, and proudly the every type
of snack mom for all of their classes. And it
was there that I was introduced to the new concept

(11:27):
of the fact that you've got some beautiful kids out
there that, in addition to dealing with all the kindergarten
fun and everything else, they're also dealing with a lot
of food allergies. They're everywhere, no doubt you've seen it
as well. So imagine walking into the school cafeteria you're
allergic to almost everything on the lunch tray. That is
life for a lot of people out there, including our

(11:47):
next guest to fourteen year old Colin Hood, who was
diagnosed with fiskine more than fifteen severe food allergies as
a baby. Okay, so imagine being Colin, and then imagine
being one of Colin's parents when it comes on top
of that here and they are joining us via our
Newsmaker line to break down the latest breakthroughs in this,
their own experiences and how they can help you perhaps

(12:08):
navigate this as well. Welcome to the show.

Speaker 1 (12:10):
Guys.

Speaker 3 (12:10):
How are you?

Speaker 2 (12:12):
How are you?

Speaker 3 (12:13):
We're doing great, so glad to hear it, Doan. I
love both your voices. Colin. I'm going to start with
you first. Paint a picture for us just a bit
if you would. You are clearly mature beyond your years.
But give our listeners coast to coast. We've got like
two hundred stations coast to coast, and when I put
the word out about this, you've got a lot of
kids out there battling a lot of the same allergies.

(12:35):
It's remarkable. Paint a picture, if you would, what it's
like growing up living with fifteen plus severe food allergies.
You know, talk about staying safe at schools, safe in
social events. Paint a picture for us, if you would.

Speaker 4 (12:48):
So, growing up with more than fifteen food allergies without
a doubt has been rough. But I make sure to
always bring my appine friend with me, which recently we've
gotten a nasal epinephrine called Nephi, which is very convenient

(13:09):
and it's a smaller size which is easier, especially going
into high school, so I could put it in my
pocket and not have to worry about bringing an extra
bag or something always. So that's been easier for me
in the past about year and a half. But uh
about the cafeteria, Yeah, and school cafeterias and social events.

(13:30):
I try and always like wash my hands before I
eat so I don't have to worry about, oh, what
did I touch last or something like that. So I
always make sure that safety comes first.

Speaker 3 (13:43):
There you go, and it's brilliant and clearly it's working.
And with these modern technology breakthroughs. When we're talking about NEPHI,
I'm familiar with phrase as well. Neither's my kids needed it,
But I knew plenty of moms who have used that phrase,
So it's always good to know more and more about this, Christine,
coaching over to you, if I could, mom to mom,
how exactly did you discover your son's allergy? Then how

(14:05):
many years did it peel off your life when you did?

Speaker 5 (14:08):
Oh, well, it's the first time I nursed him in
the hospital. His little face blew up, you know, with
hives and stuff, but we didn't They thought it was
a clog teared up. They took him away. They didn't know,
And over time he had more and more and more reactions,
and by five months old, he was diagnosed with ten
allergens and we have since found another seven. So it's

(14:28):
been it's been a eye opening experience and it's scary
every day. And yes, I had lots of arguments, or
I would say, gentle conversations with the cupcake moms as
you as you called yourself, because those school experiences were
pretty tricky to navigate over the years.

Speaker 3 (14:44):
Oh, completely completely, And I'm picking notes as you're talking here, Christine.
I'm gonna stick with you if I could. You got
a lot of parents out there my age. I think
I've got a few years on you, no doubt. Maybe
a couple, you know, a dozen years on you. But
you've got a lot of moms out there, new moms
who grew up like I did, where there weren't quite
as many ergies out there, and now they're saying, Wow,
brand new reality. Beautiful kids out there have got a

(15:04):
number of allergies out there. Oftentimes they outgrow them, whatever else,
but we've got them right now. Talk to me a
bit about how parents can help, you know, their kids
with food allergies feel confident as they jump on the
school bus, These beautiful kids getting ready for another year,
How do we make them feel confident and throwing Any
advice you have for parents, you know around this back
to school.

Speaker 5 (15:24):
Season, absolutely, and I'd say advice for parents with kids
with food allergies and those that don't have food allergies
is first of all, inclusion and independence. So making sure
that I've tried to help Colin navigate this on his
own because I'm not always going to be there and
he's got to keep himself safe every minute of every day.
I mean, school projects have food products in them, lunchroom snacks, birthdays,

(15:47):
sports events, everything. So we have to, you know, make
sure that he can do this himself. And so the
more that we create inclusive environments, create policies, communicate with
school nurses and administrators. There's a new twenty twenty four
expert recommendations from the CDC out called Food Allergy Management
in Schools, which is like a checklist. So there's a

(16:07):
lot of great resources out now that I didn't have
when Colin was in elementary school that I hope other
parents will be able to tap into.

Speaker 3 (16:14):
Brilliant and I knew the time would fly. We will
put a link to Nephie on our website and our
social media as well. You guys are crushing it out
of the park. We are just so amazed and and
this is fantastic the work that you're doing. Thanks for
all that you do for awareness and everything else. Colin,
go and crush it on your next school year. You're
gonna do great. And you guys got an open mic anytime.
Please join us again when you can.

Speaker 6 (16:34):
Thank you.

Speaker 5 (16:34):
Yeah, definitely check out Nephie. That needs left enoph It's fantastic.
It's been a game changer for us. So take care
and thank you so much.

Speaker 3 (16:41):
Oh you bet, guys, thanks so much for joining us,
and we'll be right back in right after this.

Speaker 7 (16:55):
Not too.

Speaker 3 (17:10):
And we are back with the Christian Egopian Show. And
I've been looking so forward to our next guests. You
guys know that I'm the proud owner of a college
age daughter and a high school age son, and they
are just dream boats in every way.

Speaker 2 (17:25):
I lucked out huge.

Speaker 3 (17:26):
My husband and I constantly marvel because he and I
were you know, we weren't bad kids, but we weren't,
you know, as great as these kids are, So we
really lucked out huge. And in our interactions with so
many friends, so many family as our kids grow up
from kindergarten on, you interact with wonderful families who are
going through a lot in today's society, and they're crushing it.

(17:47):
They're doing everything they need to do. But it feels like,
and I hope I'm not sounding, you know, like I'm
out of line here, but it feels like today's parents
seemed to have a lot more on their plate when
it comes to raising these beautiful kids. We had to
deal with COVID, and again we looked out huge in
our neck of the woods kids ted school every day,
and you know, they were fine with that, but there's
so many other things going on, and as a result,

(18:10):
I feel like the two are kind of intertwined. We've
got a lot more kids out there that are kind
of mentally sort of during the fog sometimes sometimes they're
in the dumps. They're constantly bombarded with images with news
story that we never had to deal with when we
were in high school. And I've been so pleased to
have the chance to interact with our next guests because

(18:30):
nine to eight eight Day, You guys have heard this right,
It's a national initiative on September eight. It's coming up
to raise awareness about the nine eight eight Suicide and
Crisis Lifeline, and this day represents and highlights the huge
importance of mental health guide, suicide prevention, all of the
things that none of us want to talk about, but
have never been more important to talk about. In three

(18:51):
years since the launch of nine eight eight, the US
especially has made some really important strides in expanding access
to mental health. Is support ready for these numbers, guys,
picking point five million people have reached out for help.
These guys are getting it done and joining us from
a very busy day via our news line are NOMI representatives,

(19:12):
Hannah Whatsaloukey, Chief Advocates, the Officer. Welcome to the show.

Speaker 2 (19:16):
We're so glad you're here.

Speaker 6 (19:17):
Thanks so much. Kristen, so happy to be with you
today to talk about ninet eight eight.

Speaker 3 (19:21):
Hannah, we've been looking forward to this and thank God
for the work that you do because, again, as a
total helicopter mom, I'm like the dark Knight. I mean,
I'm like Batman out there. I like to think I
am my kid, call it something else, but you're looking
at your kids constantly saying how do we help them
navigate the society that we live? And I think every
parent had thought that way. You've got even more spastic

(19:44):
parents than usual. And I don't mean to throw that
phrase around deslippantly, but there's a lot of kids out
there having to deal with stuff and having to battle
back stuff that I feel like my generations didn't have to.
They'll be if parents want to help their kids in
any way they can. And we feel like we we
don't quite have the background, the history, the experiences ourself,

(20:04):
but so we're kind of flying blind and that's where
your amazing work comes in. So it's so important talk
to me a bit about our latest mental health crisis
on youth and families and communities and the impacts that
you're seeing from your unique view on all this.

Speaker 6 (20:23):
Yeah, I mean, the last few years have highlighted the
extent of the mental health crisis in this country, especially
among our young people. I mean, tragically, one in ten
adolescents seriously contemplated suicide in the last year. I mean
one in ten. That is unacceptable, and that's really where
nine eight eight has come in. You know, this is

(20:44):
a major initiative nationwide to make sure that anyone who's
struggling can call ninety eight and talk to a compassionate
crisis counselor in their moment of need. And these crisis
counselors are amazing, and they're often talking to people on
the worst day of their life, right but we know
it makes a difference if somebody is struggling, if they're

(21:04):
having a bad day, if they are and you know, depressed,
whatever it might be, if they're in distress, these crisis
counselors are making a difference. And we want every kid,
every parent, every person to know about ninet eighty eight
as a resource because it's available nationwide to anyone twenty
four to seven.

Speaker 3 (21:24):
Oh, Hannah, it's so true, and you're I'm taking notes
that you're talking here, and what you're saying is so important.
And I feel like every generation has had, you know,
a group that they want to help more than you know,
maybe something new. Perhaps it was when I was a
kid in the eighties, we were thinking a lot about
our Vietnam vets. You know, now we've got another generation
of kids that are having to go through something that

(21:44):
I didn't have. It's back to go through. You know,
I lived a pretty dorky lifestyle, and I mean it
as a compliment to my parents. So when you talked
around deep numbers and the work that you're doing, it's
so impactful.

Speaker 2 (21:56):
No doubt.

Speaker 3 (21:57):
You had an idea of what you were going to encounter,
and you launched the the initiatives, and as you got
them going coast to coast, what had been some of
your biggest findings when it comes to this, What have
been some of the things that are really stuck out
in your mind?

Speaker 6 (22:10):
Yeah, you know, Nami's been advocating for this resource for
many years, and you know what we wanted to make
sure is that people could get help in any way
that they need it, and so ninety eight is just
the start of that, and organizations like NOMI are advocating
in communities across the country. Some people are going to

(22:30):
get the help they need over the phone with that
crisis counselor some people are going to need more help
than that, and so we're working in communities across the country.
We are a nationwide alliance, so we are working in
every community to make sure that we have more crisis
resources available, but also that we're giving more resources earlier on.
So we're having more mental health support in schools, more

(22:54):
mental health training for teachers and coaches and administrators, and
more support for parents. That's really our mission here at
NAMY is to make sure that everyone who needs help
and support is getting it and ninety eight is a
crucial piece of that puzzle.

Speaker 3 (23:08):
Yeah, it's so true. And again I gave up writing
notes to myself. You're talking so many great things at
once and I can't even write them all down at
the same time. But something that really stuck with me
is is something that you mentioned, and that is early detection.
As with any other health crisis, early detection is the
game changer, and you've got a lot of parents who
have slept about three hours in the last year. You know,

(23:30):
they're on fumes, and parents throughout millennia have been, but
they feel like, am I touching all the clues? Am
I reading my kid write? You know, they'd lay down
on train tracks, but sometimes they just miss these clues
and they kicked themselves later for it. Tell me a
bit what you encourage parents to take a look for
when they want to make sure their kids are navigating
this crazy, you know, latest chapter in their lives and

(23:52):
getting it done.

Speaker 6 (23:53):
Yeah, you know, I think parents are in a really
important position to see if there are changes in their kid.
Are there changes in how social they are or what
activities they're doing, or in their friends' community, are they
hanging out with people or not hanging out with people.
Sometimes those changes are an early detection, and sometimes parents

(24:13):
can't see it, you know. So it's really about making
sure that all the other folks that are in that
child's community are also trained. And that's where you know,
training for teachers and resources for parents is so critical
because you never know who that child is going to
reach out to, and you want them to have a
trusted community that surrounds them. So whomever they choose to

(24:36):
confide in is ready for that conversation.

Speaker 4 (24:40):
You know.

Speaker 6 (24:40):
One thing that I will note is that you know,
nine eight eight is a resource for people who are struggling.
It's also a resource for people who are worried about
somebody else. So if you are a parent and you're
concerned about your kid, your kid is exhibiting very different behavior,
you can reach out to nine eight eight and they
will give you, guysdance and support as well. And as parents,

(25:03):
you know, as a fellow parent, you know, we often
worry about everyone around us and not ourselves, and so
I also encourage parents to think about their own mental
health and well being. You know, last year, the previous
Surgeon General, doctor VIVEC. Murphy, put out a report called
Parents under Pressure, and they found that about four and
ten parents or caregivers were so stressed that they could

(25:25):
not function most days. Four and ten. I mean, that's
really overwhelming, and so you can't pour from an empty cup.
So I also encourage parents out there to really try
to invest in their own well being so they can
be there for their families.

Speaker 3 (25:39):
It's so true, you can't pour from an empty cup.
I need that on a T shirt.

Speaker 2 (25:43):
Oh my god.

Speaker 3 (25:44):
And here to the next thing. I am so blessed
with my kids. It is remarkable. I mean, I'm so lucky.
I mean, there's just no other word for it. I've
got these two beautiful kids. They're healthy, they're strong, they
put up with you know, me and my husband on
a regular basis, and I can't thank them for it.
You brought us something that I wish to God, we
had a half hour. We've only got a minute before
we have to wrap up. You made me think of something,

(26:04):
and that is you know, We've got two hundred stations
coast to coast, some of the best listeners you ever
wanted to meet. And when we have experts like you
on and they're talking about resources for parents, and they're
talking about you know, and you and I are talking
about how generations change, it makes me think, like a
lightning strike. It reminds me a lot of times with
these kids, they're not being raised by parents. Rather, they're

(26:26):
being raised by one generation farther removed. They're being raised
by loving, amazing grandparents. And if we think parents are
kind of, you know, deer in the headlights, what do
I do with this new technology. Grandparents especially are ten
times more. You know they can they can cook a
meal from scratch for ten cents and ten minutes. But
a lot of times with this new technology, they're like, no,

(26:48):
I'm not I don't know what this number is.

Speaker 2 (26:50):
I don't know what this website is. I can't make
my phone work.

Speaker 3 (26:52):
So I think to myself that a lot of times
you've got an entire demographic grandparents taking care of this
beautiful next generation, and they might be one step further removed.
We're going to put you all over our social media.
I can't wait to get this on the YIR. Give
us that website one more time where we can steer
our listeners coast to codes sure.

Speaker 6 (27:11):
I encourage people to go to Nomi dot org. That's
na Mi dot org slash nine eight eight. You can
find all the information you need there to learn about
nine eight eight, and make sure you're spreading the word
with your community so everyone knows about this resource.

Speaker 3 (27:26):
Excellent stuff. Hannah c Ao for Nomi representatives. I can't
thank you enough. I knew the time would fly. You've
got an open mic anytime. Please join us again when
you can and thanks so much for all that you do.

Speaker 2 (27:37):
We appreciate it.

Speaker 6 (27:38):
Thank you so much.

Speaker 2 (27:39):
You bet we'll be right back gang right after this.

Speaker 7 (27:47):
Not to be.

Speaker 3 (28:03):
And we are back with the Christian Egopian Show. And
you guys know how much I love our medical segments.
It is remarkable the strides that we've made in so
many arenas. It's always so uplifting and just deceive and
connect directly with all of our hardest working doctors and
researchers right there on the front line. And for families

(28:24):
with a history of rare genetic diseases, you've got a
real worry, a real concern understandably about inheritance. Inheriting those
genes you can carry really a big significance can be
kind of like hovering over you just a bit, and
I want to make sure I pronounce this right. Spinal
cerebular a taxia SCA is one such group of these

(28:45):
neurodegenerative inherited disorders. It's very rare, it is debilitating, but
people are working night and day at the National Ataxia
Foundation to make these to make breakthroughs and ways we
never thought possible before. And there's a Let's find a
Way campaign that's aiming to raise awareness of SCA in

(29:06):
hopes of finding a way to relieve future generations of
this phenomenon and joining us from a very busy day
on our newsmaker line is doctor Teresa to share more. Doctor,
thank you so much for joining us. How are you
doing today?

Speaker 1 (29:19):
Great?

Speaker 8 (29:19):
How are you?

Speaker 3 (29:20):
I'm doing great? Thank you so for people out there
on the street like myself, where maybe this is a
rare term, it's something we're not really familiar with. Break
down for us in a minute or so, the day
to day impact of this phenomenon called SCA on patients
and their families. Paint a picture for us, if you would,
right so.

Speaker 8 (29:39):
Spinal sarabellary taxi is a group of rare, progressively debilitating
neurodegenerative diseases that are caused by damage to a part
of the brain cause called the cerebellum. Now serehbellum is
responsible for coordinating movement, so it is a genetic disease.
It does have generational impact on families, and these patients

(29:59):
are going to be those with loss of motor skills.
They haven't balance, they fall, they've got thinking problems, vision problems,
and problems with coordination. Of their arms and legs, and
the problem is that they're going to get worse, and
as they get worse, they're looking towards being in a wheelchair,
long term disability, shortened life, poor quality of life. And

(30:22):
the really terrible thing is that there's no treatment for
these patients and as yet, no cure.

Speaker 3 (30:28):
Yeah, and I'm taking notes as we're talking here, and
this is where your work becomes all the more important.
Explain the need, if you would, for the urgent need
for these treatment options for SCA and other rare diseases.
You know, how do we go about helping to assist
from our standpoint on the you know, on the sidelines here,
how can we help and what are your current biggest

(30:49):
pushes towards finding a cure?

Speaker 8 (30:51):
Yeah, so it's really surprising that one in ten people
in the United States suffer from some rare disease, and
you know, that's more than cancer and AIDS for example.
But ninety five percent of those patients have no treatment
options available to them. And you know, these patients with
rare diseases deserve the same urgency and access to treatment

(31:13):
as those with more common diseases or conditions. So we're
partnering with the National A Taxia Foundation on there let's
find a way campaign so you know your listeners can
go to Nationally Taxi Foundation at a Taxia ataxia dot
org slash let's find a way to sign and share

(31:35):
a petition urging, for example, the United States Food and
Drug Administration to consider treatment options for these rare diseases
with unmet needs, including spinal cerephellar a taxia. You know,
while raising awareness for the ataxia community what they go
through and the strength they show in dealing with these

(31:56):
patients who have no treatment options.

Speaker 3 (31:59):
Right, and it can feel so daunting when you when
you hear you know, no treatment options and you want
to help so much and you're trying to spread awareness.
What are you finding to be the response when you know,
when you approach a new group or you have a
new set of ears around you and you're hearing of this.
Are people shocked that this exists, that they're you know,
they want to help as well? What are you finding
to be the response when you share this information?

Speaker 8 (32:21):
Really interesting? I think that patients are very positive, of course,
and the caregivers are positive, but even people who know
nothing about this are very positive, and some of them
come up to me and say, oh, I know someone
within balance, I know someone who's been in a wheelchair.
I have a family member who said something like this,
but we never knew what it was. But we have
such strength now in our genetic testing that we're able

(32:43):
to help families many times figure this out. So when
I talk to people who don't know about this, they're
really interested in it, and we get just a very
positive response.

Speaker 3 (32:56):
Good stuff. Now, you've got an amazing vantage point on
all of this. So many of us don't. Where do
you see this research leading in the years to come?
I realize nobody has a crystal ball, But are you
anticipating a possible treatment in the future that involves, you know,
therapy is of some sort. Are you finding you is
your research leaning you one way or the other? What
are you seeing on the horizon with this? Yes?

Speaker 8 (33:18):
Good question. So you know the problem with a taxia
is a taxia is a symptom, and there are about
one hundred different types of a taxia. Spinal cerebellary taxia
as a group comprises fifty different types of a taxia.
There's another type of a taxical free tricks ataxia that
does have an FDA approved treatment. We're also doing for

(33:39):
the first time phase one studies in gene therapy, which
I never thought I would see in my lifetime. It's
just fantastic work. The problem with the spinal ceahbellar A
taxias is that they're lagging behind. So we really need
to focus on that group of people, those folks with
these fifty types of diseases that really do not have
that access.

Speaker 3 (34:00):
Yeah, it's important. How do we get more people involved
in this? And are you finding social media to be helpful?
And we love having you on the radio. We've got
shorted stations coast to coast. What are you finding to
be the most effective way of getting the word out
about all this?

Speaker 8 (34:13):
Well, you know, stations like yours and programs like yours
are invaluable source a resource for us, So thank you
so much. Social media is fantastic. The nationally Taxia Foundation
does a phenomenal job in collating all this. It's like
a central place for people to go. So I would
tell them to start taxif dot org, look up some
of the resources there, sign the petition, learn about the disease,

(34:37):
and the patients are going to see pictures and you know,
learn personal stories about some of these patients and their families.
I would start there and then move on on.

Speaker 3 (34:47):
We're from there, brilliant and as one of the parents
on the sidelines, you know, please know that we are
so impressed with all that you do. We're so grateful
for all that you do. And you know that you're
phrases so beautifully earlier saying you know, we wish we
were further ahead in this. That's the sign of a
doctor that's going to get it done. So again, on
behalf of a very grateful listening population who is so
grateful for all that you do. We're so pleased that

(35:09):
you were able to join us today. I knew the
time would fly. Give us that website again where we
can send our listeners to you to learn more and
maybe even donate to your cause if we can.

Speaker 8 (35:16):
Thank you so much. Yes, it's www. Dot A T
A X I A A taxia, dot org for slash
let's find a way.

Speaker 3 (35:26):
Excellent dot org I always mess that up instead of
dot org aid you dot com. We'll make sure it's a
dot org. We'll put a link on our social media
as well. Doctor. Thank you so much for all that
you do. You got an open mic anytime. Please join
us again and be well.

Speaker 8 (35:38):
Thank you so much.

Speaker 1 (35:39):
You've betten until next week. Save those pennies, pay with cash,
and you all stay frugal out there, not to