Hey, folks, welcome to Good News York. I'm Matt
Major from Growth Mode Tech, joined as always
by my handsome, spiky -haired co -host. I'm handsome?
Thank you. Here's a good spiky. No, thank you,
Matthew. I don't know about handsome, but I'll
take it. I'm excited because we have a special
guest. And, you know, to be honest, she is kind
of bringing your points up just because you're
close together. Well, obviously. I mean, I'm
a thorn. Between two roses. Hey, welcome. Oh,
I'm excited to be here. Thanks for having me.
How are you? I'm very content and happy today,
honestly. That's how I'm feeling. Yeah, you guys
feel in the same way? That's the best answer
ever. I mean, I'm kind of cranky this morning
and then you showed up and it was like you brought
a wave of coconut water and sunshine. Coconut
water? She does that. Kate knows a lot about
coconut water, we found. Asked her a question.
I was expecting just like yeah this she got down
to the nutrition chart She knows telling you
we're looking for our natural electrolytes. This
is what we're looking for replenishing our body
because I'm sure you guys feel this too I've
got a lot to do every day. And you want to show
up, and you want to be like all these things.
So I do a lot of research into easy, quick things
I can do so that this energy that I want to show
up in the world as just is there, right? So if
it's easy, I'm going to try it. So that's an
easy one. Coconut water. I like it. It's got
electrolytes. We just did an advertisement. It
is actually very good. It's what the plants crave.
It's actually, it's like supercharged water.
Right. That's what I'm hearing. Especially if
you're a heavy drinker and you're hungover. Coconut
water. You don't drink that regular water like
from the toilet. Oh, my. Well, don't do that.
There's no electrolytes in there. That has some
different nutrients. Yes, it does. Yes, it does.
Welcome to Good News York. Here we are. Oh, man.
This show is off the rails. How many podcast
listeners you get? Well, you know. Yeah, we had
some. About three and then. So, Kate. We offended
them with our electrolyte talks. Tell us about
you and your business. I want to make sure I
say it right. David's Refuge, correct? You did
it. Yes, that is correct. Let's talk about that.
Well, I love to talk about David's Refuge. I
started working with this organization 10 years
ago, so it has been really part of my life story
now and something that I'm really honored and
proud to be a part of every single day. Before
I was with this organization, I was running the
Muscular Dystrophy Association, and I did that
for 10 years. So it's crazy that I'm only 25
and was able to do both of these careers. But
in all seriousness, 10 years at MDA opened my
eyes to what families go through. We were working
here locally. We were seeing families going into
our clinics at the local hospitals. They would
receive this diagnosis, usually for their child,
but we also served adults that would be diagnosed
with different forms, mostly with Lou Gehrig's
disease. And you would watch this ripple effect
happen. You would see this initial shock, and
then you would watch the family try to pick up
the pieces of literally an explosion going off.
And then you would slowly see, in many cases,
the parents start to like frazzle out, you know,
and they would start to lose the connection to
each other. They would start to have this guilt.
They would start to question every decision.
And then ultimately many of the families, many
of the moms and dads would have to go through
a divorce because the challenges are just so
heavy when you're trying to deal with these diagnosis.
So. Ten years into MDA, never really thought
about the mom and dad, other than caring deeply
about them, but our focus was always on the child
or the person. David's refuge came to be through
a local couple, Warren and Brenda Full, and they
started this organization in their house after
they had lost their son David to a rare genetic
disease. And they had started this because they
wanted to give back to moms and dads just like
them. And they said, this is the hardest thing
we have ever done in our life. We cared for our
son David for 13 years. On top of being mommy
and daddy, we were also full -time, unpaid family
caregiver to him. And so they started this in
their house. And I started hearing about it from
my desk at MDA. And I was like, this is so cool.
This is so needed. Oh my gosh. No one's doing
this. And then I saw that they had a job opening
and I applied and it was one of the best decisions
I've ever made in my life because this organization
needs to be here. It needs to thrive and it needs
to continue to grow because there are moms and
dads all across our communities, New York, and
then our country that are not feeling seen. And
that's what David's Refuge gets to do and that's
what I get to do in my role there every day.
That's incredible. It really is. It's hard for
me to find the words because we talked before
the show and how this hit home with me. I don't
know who knows, but I lost my brother to leukemia
when he was three years old. I was five or six.
And it's something that stays with me every day.
But the positive part is it's made me... who
I am. It made me grow up a lot faster. It made
me look at things a lot different. But I saw
firsthand what it did to my family. And now that
I'm a dad, I almost have even more respect for
my parents now because knowing I don't even want
to entertain the thought of what that would be
like to lose a child. And the fact that they
did and the fact that they're still here, I don't
want to say that they're still sane because they're
a little wacky. Or any of us. But I mean, you
know, you talked about the divorce thing. You
know, they're not divorced. They're still together.
And for those of you that might question, like,
why would a divorce... There are so many elements
of, like, why are you acting okay? I'm still
not okay. You know what I mean? There's all these
thoughts and things that happen when a child
or any family member passes away. So what I think
you're doing is, you know, I don't know if there's
a God, but if there is, you're doing God's work.
Because it's just, it's absolutely incredible
to do. It's so special. So, Kate... It's really
incredible to hear about the why. Let's talk
a little bit about some of the specific things
you do for some of these folks. I know you got
a ton of incredible programs for these caregivers.
Can you tell us a little bit about those? Absolutely.
So what started as our very first service, what
Warren and Brenda Full started this organization
doing, is they converted a wing of their house
on their own dime after losing their son. It
was David's wing of their home, and they converted
it to a five -star bed and breakfast, as any
of us would, obviously, and started welcoming
people in. So that model still exists today,
but we actually serve families in existing bed
and breakfast locations, existing hotel partners.
So our two -night getaway is an all -expense
paid retreat for parents. And the mom and dad
are still responsible to find childcare because
I always say I would bet a million dollars even
if we had a lineup of people who could watch
children. many of our parents would not trust
that. How many of us would trust our kids to
someone we don't know, let alone our child with
special needs or that's medically fragile? So
these two -night getaways are really what we
have been known for. We this year will serve
nearly 500 couples or single parents in these
two -night getaways. And one of the best parts
of that is we will book a beautiful hotel. We
will book eight rooms. And so moms and dads will
book on our website and they will randomly go
with six to eight other couples that are from
across New York state. And many times it's these
God stories of. I met my person. So a mom from
Syracuse might meet a mom from Buffalo. Chance
happening, and they have exactly the same story
happening. They understand each other. And humans,
we need other humans. We need connection. Very
much so. And these caregivers, many times, feel
so alone, the social isolation. So they'll meet
this other. So they're getting this great weekend
with their hubby. They're pouring into themselves,
but then they also get this extra layer of meeting
another parent who gets it. And then they get
their person that they can call in the middle
of the night. In addition to that, we have added
beautiful services. We have a wellness program
now, and that is a holistic approach to wellness.
Think about it, guys. What do you need to be
well as a human? Well, I like bobbleheads. They
keep me entertained. No, I'm kidding. No, I know
what you mean. Guessing like sleep. Sleep? Yeah.
Opportunity to take a break from things. Your
basic needs, just alone time. Food. Food, sleep.
Yeah, those are the basic needs that many times
are met through... all of the different experiences
that David's Refuge offers. But then we really
dig one level deeper, and we think about your
mental health. And we'll talk about that because
our buddy, Dr. Melissa Karman, is going to be
part of our upcoming event in June. And she has
pioneered a program that allows David's Refuge
to outsource mental health counseling services
to her practice. Because I'm no mental health
therapist. I don't have all the letters after
my name like she does. But we outsourced that
program to her, and now we're able to cut through
all the red tape for caregivers. A caregiver
applies to David's Refuge. They automatically
are offered mental health counseling services.
That's incredible. That's amazing. So we do mental,
physical, nutritional support. We offer financial
support because financial counseling and wellness,
because all of those pieces go into making us
well and being able to thrive. And then the third
program we offer is called Community, and this
is large -scale events that are for just the
moms we serve. We have a big Nourishing You Moms
event coming up. And that will be at Woodcliff
in Rochester. It's a beautiful location for 100
moms we serve. They get there in the morning.
They learn about wellness all day together. And
then we give them a big overnight together. So
we do events like that. We've done really fun
things. We've sent a bunch of dads we serve out
to the Buffalo Bill Stadium for a private tour.
They got to go on the field. So that community
program. Mike's dream. Oh, you'll have to host
next time. I'm a humongous Bills fan. OK, noted.
So we do really cool events like that, too. So
it's meant to get people together, the whole
family, or just different people that can come
together. So those are really the services we
offer. And in total this year, we'll touch over
2 ,000 lives. So it's really grown and the first
year to give context Warren and Brenda in their
house are 43 couples Wow, so in just since just
since 2012 we have had exponential growth and
it's all because this community believes in this
mission and We're able to continue to show up
unbelievable. It's it's so incredible to hear
also. I just want to say To start out with 43
couples in their first year is incredible. That's
yeah, and that just kind of shows you how they
really set you up for success, and you can see
that your leadership is clear. Just hearing you
talk, it's obvious to the world that there couldn't
be somebody better for this. But again, it's
obvious that they also, the folks that started
this, really set you up for success to allow
you to do that. So that's, what a great pairing.
Yeah, and what you're also doing is you're creating
a support group without calling it a support
group, you know? I quit drinking years ago and
everyone told me to go, you know, you should
go to AA. And I'm like, I don't need AA. I quit.
I'm good. They're like, no, it's not about that.
It's about just being around other people that
have the same shared experiences. You have no
idea of the value in that until you're there
and you're creating that without calling it a
support group where we sit down and we, hi, my
name is, you know, just being together in that
house and pairing them up, pairing them up. And
the other part of that, that I find amazing is.
what that family is doing is in turn helping
them. By having those people in their home, that's
therapy for them whether they know it or not.
Absolutely. Like 100%, I can tell you firsthand
that that's what they're doing. When those couples
come through the door, I don't want to say it's
filling the void of David's absence, but in a
way it is. And it's like he's still alive. without
getting too dramatic, but it is. It's like he's
still alive and well in that house because of
what they're doing and providing for those people.
Well, when you think about our soul's purpose,
you know, David had a very beautiful, beautiful
life and purpose. And Warren and Brenda will
often say that they can't believe what this has
turned into. We call David the man behind our
mission. You know, in 21 short years, look at
the legacy. that his life created. Look at what
was born from this brokenness of his death and
his diagnosis. And so you said before, it's God's
work. We very much believe that. You know, we
want every mom and dad that comes through David's
Refuge to feel that they are not alone, that
what they do in caring for their child matters,
and that God and our community, all of us, no
matter what you believe, that we love you and
you are loved. So these are many times things
we say to caregivers when they come through David's
Refuge, and nine times out of 10, it's just an
immediate. We're not trying to make people cry,
but we as humans just don't hear this enough.
Sure, especially nowadays. Especially nowadays,
yes. Bring the human back. Let's go back to human
scale. So, Kate, let's also talk about... You
do some really fun things as fundraisers, which
allow all of us who are hearing these incredible
stories and want to be a part to actually come
out and have some fun and support them. In June,
you got a crazy month of these things. So can
you tell us a little bit about what we can expect
here? Absolutely. So I was just sharing that
we actually were selected to be one of the charities
for Taste of Syracuse this year. So this was
a phone call I got just two weeks ago from one
of our beautiful partners, Tops. and Summit Federal
Credit Union. And they called and they said,
Kate, we selected David's Refuge. So we're going
to be part of that event June 6 and 7. More news
to come because I'm learning as I go too. But
huge for David's Refuge, huge for people knowing
about our mission, awareness, advocacy, that
thought that maybe a caregiver will hear about
it through this type of exposure. So we'll start
with that. And then the following Friday, You're
going to be part of it. You and your company,
thank you so much, are going to be part of our
Taste of David's Refuge, which is our largest
fundraising event we do. We don't do a ton. But
we want all the people who love our mission to
come together in celebration. So June 13th, we'll
be out at Heritage Hill. And this will be our
12th year for this event. We are honoring our
good friend Dr. Melissa Karman and her husband,
Dr. Jeff Steele. And we are honoring them because
of the program they have built to support so
many caregivers through mental health counseling
services. And we're going to be expecting another
great year there. 400, 500 people come out to
this thing. We keep it just like Kate, pretty
casual. And so you come as you are. Come have
some great drinks, listen to some live music.
We only speak for about 20 minutes, and then
we stop, and we soak in that beautiful sunset
from Heritage Hill. So if you haven't been there,
it's the best sunset around. So we hope everyone
will come out and just be part of that celebration
with us. Absolutely. I'm really looking forward
to that. For sure. Just to jump back for half
a second, this program that you've got with Dr.
Melissa is incredible. She's one of the... top
folks in town to talk to and access to mental
health professionals is very hard. So the fact
that you can deliver people a streamlined way
to some of the best help they could possibly
get is pretty awesome. And a hat tip to her as
well for coming together and offering those services.
Yeah, it's pretty fun. Her and I met at a fundraiser
probably about eight years ago. Wow. And she
had bid on an auction item. looked at her email
address that she had left on the sheet and it
was it was her practice so when I called her
I said by the way this is what we do at David's
Refuge and her and I kind of did this you know
bubble coming out I wonder if we could ever offer
direct services to caregivers through mental
health counseling and that's where the program
was born so we initially got a grant we said
let's just try And now this program has grown,
I think, 100%. It just grows year after year.
We serve more and more families. And I think
the sky's the limit for it, to be honest with
you. So as long as Melissa will have us, we'll
keep. That's just so incredible. I'm really looking
forward to that event. And there's just so many
great things. I have not made it to one of these
in the past. regretted it because all I hear
is nothing but, man, this was an awesome time.
Why weren't you there? We have a lot of fun.
We have a lot of fun. Looking forward to it.
Yeah. And you also mentioned to me previously
that a little later in November is a special
month for you as well, right? It is. So November
in our community is National Caregiver Awareness
Month. So what we like to do is really amp up
the amount of activity that's happening through
our David's Refuge platforms, through our partner
platforms, so that more and more people in our
community, like I see this as not just a billboard
here in Syracuse, I see it as let's be on national
television talking about the signs and symptoms
of caregiver burnout, what families are going
through, how all of us who are maybe not in this
moment today, can reach out to a caregiver. And
this isn't just the caregivers we serve. This
is spouses who are caring for spouses. This is
us who care for our elderly parents. It really
is a month where we just blow the roof off and
we say, hey, people are struggling in our community.
Caregiver burnout is a real thing. We are seeing
depression. 70 % of caregivers will struggle
with depression. 80 % of caregivers will see
a divorce. will not be able to sustain those
relationships. Pretty much 100 % of caregivers
feel socially isolated. So what can we as a community
do to do better in pushing into these lives of
these amazing families and people? The other
thing I love to remind people of is we will all
be a caregiver at some point in our journey.
It's not an if, it is a when. No, you are 100
% correct. So let's teach us all how to care
for ourselves now. So that when you are put in
that position, when you're loved one, you get
the call. That you have to put everything in
your life aside and you are going to enter into
a stressful, hard journey, chapter in your life.
You also know how to care for yourself because
it is truly the only way that you can care for
others and keep everything going. You're nailing
it because my last semester of college I took
a sociology class called work and family and
a big part of that curriculum something I'd never
even thought of, was a focus on caregivers and
how people have to balance not only, you know,
being a caregiver for a sick child or a elderly
parent or family member. On top of that, having
to balance work and how, you know, the workforce
in the United States doesn't really, a lot of
times, accommodate for that. And so what you're
doing... outside of just what David's Refuge
is, is you're also putting a spotlight on caregivers
and, hey, you know, we've got to do something
about this. So that's so good. Kate, we're almost
out of time and we're definitely going to have
you back because we can talk to you about this
forever. It's great. And you're so just well
versed on these things and spreading awareness
is incredible to see. Real quickly. Who do you
serve? I know you mentioned a couple of times
New York State. Is that sort of your area coverage?
How does that work? Yeah, great question. So
we serve families right now just in New York
State. We had to sort of put some parameters
on that. We were starting to get so many applications
from outside of the state. And my goal right
now is to figure out how we can learn how to
grow. but do it where I can still get in my car
and drive down the throughway if I need to. So
our next goal is to expand into the Rochester
community. We're already serving 300 to 400 families
in Western New York. But my goal this year is
to have a staff member out there and really learn,
learn all the things they don't know about geographic
expansion and what that means for our organization.
So right now, if you are a caregiver in our community,
Really kind of the things we look at are, does
your child have an individualized educational
plan, an IEP at school? Are they registered through
the OPWDD? Those are sometimes those direct line
in the sand where we know you will be eligible
for our services. We have an online application
at davidsrefuge .org. So I would encourage anyone
to go on and apply for services. We are full
right now for our respite program, our overnight
program. We were full within two weeks this year.
So we have a waiting list of close to 300 families
right now who are waiting for that specific service.
So that weighs on you. But it's a good problem
in that we're trying to figure out ways to grow
that. But there are still openings for our mental
health programs, all of our wellness programings,
and our community events. So I encourage people
to still apply for services. Awesome. Yeah. davidsrefuge
.org is the website. I'm guessing that's also
a good place to go to find out about these events
if you want a contributor come hang out. Yes.
That's where you go. Come hang with us. Awesome.
You're an amazing human being. Kate, the last
thing I want to ask, and we are almost out of
time, but I'm really curious, how many other
organizations like you are there in other parts
of the country? Good question. So we haven't
found an organization just like us. There's organizations
who do provide different types of services for
caregivers, of course. But we haven't uncovered
one that's just like what we do. That's where
I look at this as a beautiful opportunity to
bring a David's Refuge into multiple communities
and serve. So if we grow, it's for the sole purpose
of making sure this mission can be felt in other
areas of our communities. It's needed and we're
getting the calls. So, yeah. Love to have you
back with David's parents if they would be willing
to come on. I think that'd be awesome. Yeah.
That would be really amazing. Honestly, any of
your staff, we'd love to just, like I said, we
could talk about this forever, because it's such
a good cause, and it's something that clearly
needs to be talked about, because I'm a little
shocked that there aren't, you know... Well,
you know, it's one of those things that you don't...
Ten of you, at least, across the country or something.
You know what I mean? Again, from experience,
it's one of those things that you just don't
think about until it happened. Right. So people...
you know, outside. And everybody's focus is on
the sick person. Right, but even outside of that,
in the local community, you know, people in local
government aren't thinking about, you know, these
kinds of things. It's just not, it's not something
that's on your radar until, unfortunately, it
happens. Exactly. So it's great that you're out
there doing it. Yeah. Yeah. Well, where to come,
right? I mean, let's get it out there. So I appreciate
you guys allowing me to come on and talk about
it. Kate, David's Refuge, that's what you want
to check out. And come to the event. It's going
to be awesome. I didn't tell you this. My birthday
is June 14th. So your event is going to be, you
know, like a pseudo birthday party or something.
I love that. Come out in the Port David's Refuge
and watch the beautiful sunset. Forget all the
sick people. Let's celebrate Matt's birthday.
Hey, listen. We're going to sing. If it can generate
another $50 in donations to her, I will do anything,
all right? Listen, the bar is low to support
this awesome organization. We have no pride.
We will make this happen. I'll buy you a drink.
I promise. I love it. All right. Thanks, Matt.