November 26, 2021 • 31 mins
Tiffany always knew she was different but is always full of joy despite her physical challenges. When she became a teenager, she discovered just how unique she truly was. Through testing, she, her brother, and mother discovered they all had Progeria, a rapid aging disability. At 43, Tiffany is relatively healthy and definitely happy! It was a joy and honor to sit and talk with this "unicorn" who has a 1:50 million life! Tune in and enjoy this episode of Disability Talks.
Website: https://www.wanderlustcbus.com/contact-us
Instagram: https://www.instagram.com/wanderluststudiocbus/
Facebook: https://www.facebook.com/wanderluststudiocbus/
Want to be a guest on our show? Connect with us at:
Website
Facebook
LinkedIn
X
Instagram
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Intro (00:00):
Welcome to DisAbility Talks, a podcast produced by
Abilities in Motion.
I'm your host, Shelly Houser.
Join us for real conversationsand no nonsense talk from
everyday people withdisabilities, living their most
independent everyday lives.
Tune in for the latest newssurrounding disability,
accessibility, and independence.
Where conversations aren'tdissed and stories that need to
(00:23):
be told aren't missed.
So let's talk.
Shelly (00:28):
One of the world's lesser known disabilities is
Hutchinson's Guilford syndromealso known as progeria.
I first learned about thissyndrome in college and found it
fascinating what the human bodycan do.
So I reached out to our nextguest to take a deeper look at
this rare disability and ask herwhat her one and 18 million life
is like.
Please, welcome to the show.
Tenacious, Tiffany Wedekind andgood morning.
Tiffany (00:51):
Hello Shelly.
Thanks for having me.
Shelly (00:53):
So you join us from up a few states from Pennsylvania.
So I am super excited to haveyou, because I asked around the
office to my coworkers to seewho had heard of Progeria.
So not a lot of people did.
So I think you and I have somework to do for my coworkers and
our listeners worldwide.
So explain to our listeners whatProgeria is.
Tiffany (01:17):
So Progeria is a very rare rapid aging disease, and it
affects roughly 350 people inthe world.
And I happened to be one ofthem.
Shelly (01:31):
Lucky you.
Tiffany (01:32):
I know!
Shelly (01:34):
You are, you are the unicorn, Tiffany.
Tiffany (01:36):
I, uh, yes I am because I am an anomaly within my
anomaly.
Shelly (01:43):
How is that?
Tiffany (01:44):
Well, because I typically the age, um, for the
life expectancy for patientswith Progeria is roughly 13
years, seven, 13 years of age.
Some of them live older, um, dueto the, you know, new treatments
and things like that.
(02:05):
Um, the patients are livinglonger, but typically the life
expectancy is about 13 years ofage.
And I am 44 this year.
Just to take you through theland of Progeria, it's a genetic
disorder, it's a mutation.
And one of the genes thatelement a gene, and typically
(02:27):
when, uh, patients are born withProgeria, you see that very
early in life as early as a yearold, sometimes even at birth, my
symptoms developed later in lifearound the time that I hit
puberty.
So typically when patients aredying of this disease, I was
(02:48):
just literally getting startedin my life and I was having
difficulties, but they did notknow what it was.
So I am rare because I am one in50 million and even more so
rare.
My mom has the disease and mybrother had the disease, but he
(03:09):
passed away 10 years ago fromit.
So not only one of us had it,three of us had it even more
unheard of my mom has it.
Shelly (03:19):
But you were saying to me, yeah, y ou d id.
She doesn't present visuallylike the typical Progeria
patient.
N o.
Does she have any physicalsymptoms?
Tiffany (03:30):
Um, you now that when you look at her, you can see now
that we know, cause I look a lotlike my mom, but her body, she
started developing issues veryearly, but one of the things
with Progeria, the things that'snoticed is early on hairline was
(03:55):
small, a small phase, small, uh,facial features.
And she didn't have any of that.
When she got around, I wouldsay, I want to say in our late
forties, maybe I know, Iremember her being in an
(04:17):
accident at her back and theythought for the longest time it
was her back.
It was her back.
So they did all these backsurgeries to come to find out.
It wasn't her back at all! Itwas h er hips.
She had dysplasia a nd she hadto get both of her hips
replaced, b ut see, that's whatit h ad even like for me growing
up.
And I know it was like that f ormy brother.
(04:37):
I feel like an experimentsometimes because they don't
know all growing up because theyhad no idea about Progeria.
And they thought we were evenseen at genetics doctors early
on b ecause we were small.
But then growing up, like, so mybrother broken both of his femur
(04:58):
bones, hardest bone in your bodyto break.
They knew then like, whoa,what's that?
That's not normal.
So, so many things growing uplike our teeth.
My God, I've had issues with myteeth since I was seven years
old, they were pulling my teethbecause my baby teeth wouldn't
come out.
They had no idea why that washappening.
(05:21):
But all through my life, I was in b races for five, six years,
which is not normal.
Also.
Then I g et all my teeth pulled.
I now h ave, you know, justrecently, l ast two years, they
took all the rest of my teeth.
I mean, t hat's p retty smile.
Shelly (05:40):
You do, that's great smile.
Tiffany (05:41):
So it has been, they, so they haven't known how to
really treat us.
I guess.
Shelly (05:50):
Do Progeria patients typically have more brittle
bones?
Is that part of it or you don'tknow?
Tiffany (05:57):
Yeah! Issues with their joints, hips, arthritis,
dysplasia.
I mean, I have those things thatare wrong with Me.
I mean, you can't, you can'tsee, but you c an see my hands
are just, they h urt.
Shelly (06:08):
The knuckles.
The knuckles are proitrudinglike arthritis.
Tiffany (06:10):
Very little fat body fat.
So seeing that as they develop,you know, that's what they see
at first.
But then as they d eveloped evenyoung seven years old, they're
having strokes.
They're having issues with heartdisease, issues with hearing
loss, vision impairment, notbeing able to walk.
(06:33):
So I don't know why we developed the, w hen my brother
had a much worse than I didgrowing up and he passed away.
He was 39, but he had his firstopen heart surgery at 30 that's
what really triggered to findout, dive deep into like, okay,
he's having all these b rittlebones, he's got shortened
(06:55):
stature.
They even put my brother ongrowth hormone, which ended up
that growth hormone specificallywas causing defects a nd
children that they were givingit to.
So I don't know if that maybeup'd t o h is risk factor, but
you know, they didn't know.
They really started to try tofigure out well what's going on.
(07:19):
And Dr.
McBride is actually the onefinding the result that, not
him.
He had to send our blood w ork out.
I believe they sent it out tothe University of Washington.
U m, and I did a lot ofextensive research and it came
back that this i s what we had.
U m, but that was after like Ididn't get diagnosed until I was
(07:40):
in my late twenties, which kidswith progeria get diagnosed w
ithin their first year of havingit.
So I had a chance to live mylife, try and live my life.
Like everybody else has beenliving, but at the same time,
(08:01):
struggling in the processbecause they don't know how to
treat.
They did not know how they knowmore about it now they know more
about the u nderlying issues andthings that they can treat that
way, like cardiovascular diseaseand at the cardiologist between
the c ardiologist and thevascular doctor, I'm there every
six months.
(08:22):
Someone's looking at me!
Shelly (08:24):
Are you a part of this community of support worldwide?
Tiffany (08:27):
Yes!
Shelly (08:28):
Tell us about that.
What do you guys do for eachother?
Tiffany (08:31):
So I have just over, I would say these last two years
really gotten to know a lot ofpeople in the progeria community
because I, myself work closelywith, um, the Progeria research
foundation, which is head byLeslie Gordon in Massachusetts.
And the reason why she startedthe foundation is she had a son.
(08:52):
You can look him up t oo.
His name is Sam Burns.
He did a Ted talk.
I believe he passed away when hewas 18, 19.
U m, shortly after h e graduatedhigh school, I reached out to
them letting them know, likeafter it came back from the
genetics stating, yes, this iswhat our research has.
(09:15):
I reached out to them, lettingthem know of my family.
And at first they were a sort oflike, oh, you probably have
Warner's syndrome.
I'm like, m m, n o, all three ofus have Progeria.
And they were just like WHAT??!
Shelly (09:32):
They were dumbfounded.
Tiffany (09:32):
They were really excited about that because they
had never, that was unheard offor them.
So we, my mom and I, and w hileI technically my brother too,
because they h ave him, they canregenerate his cells over and
over and over and over again atchildren's hospital.
I know if you look at m y, ifyou watch my documentary, I did
(09:55):
not know that.
And then I discovered that and Iwas like, my brother he's in
here?
Shelly (10:02):
He's still there.
But part of him,(laughter)
Tiffany (10:06):
Right?
Like his cells, but they can usethose cells to do further
research, just mind-blowing tome.
So we reached out to them.
They, you know, quickly got onthe phone with us.
And next thing you know, it, weare, I raised money for them
(10:27):
through my business often on aregular basis.
But my mom and I, we donated ourDNA for them to research.
I believe right at the time thatwe did that they were starting
to research the p rogesteronelevels.
Which Progeria comes from, Idon't know if it comes from the
(10:49):
name, but we all h ave progerenand i n our blood, it gets
filtered out because we all age.
Right?
So the progeren filters outtypically at a, I would say
faster pace, which causes us to,you normal people to age at a
(11:12):
slower pace.
Ri ght?
So the progeren an d o ur bloodgets gooped up in the cells and
doesn't get released like it'ssupposed to.
Which causes the rapid aging.
So if you think about it and theresearch that they're doing
right now, if they find a curefor what we have, which is
Progeria, I just th ink Hutinson-Guilford syndrome, th
ey're o n the path to findingthe cure for what do you think?
Shelly (11:36):
Aging?
Oh, aging in general, you aregoing to be the fountain of
youth!
Tiffany (11:43):
I feel like the fountain of youth.
Shelly (11:43):
You act like the fountain of youth.
So do you think that they'restudying you and your mom and
your brother, because the threeof you, A, the three of you have
it together as a family and B,which is an anomaly, but then B
also you guys have all livedlonger than the normal expected.
Tiffany (12:03):
Yes.
Shelly (12:04):
Life cycle.
So if anything else, they couldprolong the life expectancy.
Tiffany (12:11):
Correct, Yes.
It, which is what they're doingnow.
They have new, um, they have adrug that now it was recently
approved by the FDA.
It's called Lornafarnib.
I believe the drug name nowZelinski, but as Lornafarnib and
I was on it for a short time.
I tried, but in the side effectsfor me were just, I had to, I
(12:34):
had to really weigh out, what doI want it to be?
Do I want to now have the ideathat I'm going to live a little
longer?
But I'm going to feel like crapthe whole time?
Or am I just going to take mychances?
I'm 44 years old.
I've made it this far,so far.
I'm in good health for the mostpart.
(12:56):
I mean, I do have issues, butwhen I look at the kind of
issues that the typical patienthas, I have to be very thankful
that I can get up every day anddo whatever I want, because
that's how I've made my life.
It wasn't always like that.
Shelly (13:13):
Yeah.
But one thing you're seriouslyinto is yoga.
Tiffany (13:16):
Yeah.
Shelly (13:16):
And you post a lot of yoga.
H ow, how does that work for youh olistically?
Tiffany (13:22):
Oh, I've been doing yoga for a very long time.
Actually the woman thatinstructs, uh, one of my
instructors here in my studiohas been my instructor
personally for the last 16years.
And I've always been a healthygirl and that just got, you
know, as I got older, I don'teat fast food and it sorta has
(13:43):
stuck with me.
Um, but yoga keeps me strong.
My body strong.
It keeps me flexible.
Um, and both physically andmentally, because I am someone,
you know, again, I growing up, Isuffered, um, with things like I
was a hyper child.
(14:04):
Yoga to me really helps me.
And well, not just thecardiovascular wise, it, we do
so many exercises, um, in yoga,different kinds of moves and
positions.
And we focus on our breathing.
That is so important.
People don't understand a lot of, you know, I hear people are
(14:26):
like, oh yeah, this bad, no yogais a way of life.
Whether you want to do it ornot, sometimes you gotta find
something that works for you andstick with it.
Like my cardiologist told me,Tiffany, whatever you're doing,
you keep doing it because youare consistent.
So yoga to me helps me stayconsistent.
(14:50):
It, I mean, breathing isimportant.
That helps me, circulation just,it keeps my body mobile.
I mean, with all the arthritisand things that I have, I mean,
I'm not sitting here putting myleg behind my head, but I'm
doing things that I can do.
I, you know, I have my limits,but it keeps me, it keeps me
(15:13):
very healthy and strong,physically and mentally.
Because I need to calm down.
You don't even know me, but I'msure you're, you can feel like
energy.
Do your little life fell inthere.
Shelly (15:27):
Well, I even feel your energy following you on social
media, because you're alwaysgoing out with your friends and
you're always out dancing andyou're always trying new,
fabulous, eclectic clothes.
Tiffany (15:39):
Yeah.
Well, I'm not always out dancingthough.
I think my dancing out days areover, but I am dancing.
Well, now you get older.
I look, I don't belong in a clubthese days.
Shelly (15:57):
I think you and I are both a little older for the
clubs, but,
Tiffany (16:01):
Um, like I want to be in bed when it's dark.
But I do, I love fashion.
I actually just started my ownfashion line to Lululmoon and I
do upcycling and differentthings, but I've always been a
fashion kind of girl.
And I liked dressing people uplike that too.
(16:26):
It's very boho.
It goes with my, my spiritbecause that's how I started.
I live my life every day is anadventure for me.
It really truly is.
I mean, I have my good days andmy bad days, like trust.
I mean, you see me that I'mbubbly all the time, but I have
bad days.
I definitely have bad days, butI don't let people see that
(16:48):
because I, I think, I feel likeI was born to inspire people.
Like I really feel like nowlater in my life, all the things
that I bumped, like POrogeriaside life has been tough for me
because I'm different.
I'm just a different person.
(17:10):
Some people are inspired bythat.
Some people see an opportunityby that.
And that's just the way it'sbeen.
But I definitely feel like now,like once I got divorced, I got
divorced four years ago andvery, very, very hard for me to
do.
But I do feel like now Iwouldn't be where I am right
(17:30):
now.
If I had not done that and letgo of all of that.
Cause that's what was standingin my way.
I was trying to make otherpeople happy and not even
considering myself on a dailybasis.
Shelly (17:44):
And what made you happy,?
Tiffany (17:44):
What made me happy?
Shelly (17:47):
You had to make yourself happy first.
Tiffany (17:49):
Yeah.
And I didn't know what I wasgoing to do.
Like I called my brother and Isaid, Hey, I'm ready to go.
And I was like, if you don'tcome now, just hurry up and come
now before I changed my mind andhe was like, well, I'll be there
in 15 minutes!
Shelly (18:05):
Be out on the curb.
Tiffany (18:07):
I remember shortly after that, I was laying in bed
at my parents and staring at theceiling going, okay, now, what
am I going to do?
Like, I was a wife.
I was a mom.
I, uh, I've done.
Okay.
Done what I thought I wassupposed to do.
You know, I made a fan, blah,blah, blah.
So now what am I gonna do?
(18:27):
And just something went off inmy head.
And I said, I'm going to tellthe world who I am.
I'm going to tell the world whoI am.
I don't know how I'm going to dothat, but I'm just going to do
it.
That's when I created TenaciousTiffany.
Shelly (18:40):
Yeah.
And that's what I wanted you onthe show.
And that's why I've beenfollowing you for so long,
because I wanted this time onour show to give you a voice.
Tiffany (18:49):
Yeah.
Shelly (18:49):
To tell the world what Progeria was, because it is so
important and there's millionsof other disabilities, but this
one is so amazingly unique.
A nd, and I look at otherProgeria patients and I think in
some way, t hey're, they'rebeautiful.
And they h ad t his certainbeautiful,
Tiffany (19:07):
And they're all happy.
Shelly (19:09):
Yeah.
They have this beautiful littleaura about them.
Tiffany (19:11):
Do you notice that they're all happy?
They're all smiling.
Shelly (19:15):
They're living their best for the time that they have
on this planet.
Tiffany (19:19):
And they get that.
Shelly (19:20):
Yeah.
Tiffany (19:20):
That's, what's the difference?
Like, so growing up, I didn'tlike, again, I didn't know that
I had Progeria.
I didn't know that i t hadanything.
Shelly (19:28):
Right.
Tiffany (19:28):
I just thought it was different.
Shelly (19:29):
Right.
Tiffany (19:30):
I was just developing different.
So I accepted that very early inlife.
And then when I found out that Iactually had something that
could, like, when I saw, whenthey told me I had Progeria, I
said, just so what does thatmean?
They were like, we have no idea.
They don't know for you.
Like it could be like, we don'tknow.
(19:51):
We have nothing to tell you.
So that just even more so when Iwas in that transition period of
my life, I was like, you knowwhat?
I really just, and I was scared.
I was very scared to tell peoplethat I had a disease because I
said, well, that's going to openup a whole different can of
worms for me when peopleactually knowing something is
(20:12):
wrong, you know?
Cause I get asked on a dailybasis.
You would not believe the kindof questions that I get asked.
Right?
So now I'm just like, Google it!You can Google it now.
Youtube to explain it!.
Now go figure it out, educateyourself.
,,, Yeah.
But I really want to, um, Ireally feel like now I, and not
(20:36):
only just tell people about thedisease, it's the disease that I
have.
It, it it's rapidly people under, uh, th they, they wonder why
I'm just so on the go all thetime.
Go, go, go, go let Tiffany can'tyou just relax?
No, I can't relax.
I'm rapidly living my life.
(20:58):
Okay.
Because I don't know what'sgoing to happen to me.
And I don't know, one day I'mgonna wake up and go, Oh God I
can't move.
And I wish I would have donethat when I could move.
So I'm going to do, I'm going todo whatever I want.
I'm going to do whatever I can.
And I want people to understandthat your life can be gone in a
(21:23):
flash of an eye.
Like it's still surreal that mybrother is gone.
Like, I don't believe that he'sin the ground.
That's not where he is.
Right?
Shelly (21:32):
Right, right.
Tiffany (21:33):
So people don't get it.
Don't appreciate it when it'sgone.
Get, appreciate it now.
Shelly (21:39):
Exactly.
I think that is a perfect timeto take a commercial break.
We'll be back.
Ad (21:43):
Abilities in Motion is one of Pennsylvania's premier
centers for independent livingexisting to educate, support,
and promote individuals withdisabilities.
Our programs are focused onproviding opportunities for
individuals with disabilities tolive independent,
self-determined lives.
Abilities in Motion advocatesfor local, state, and national
laws that protect the rights ofpeople with disabilities.
We are proud to createinnovative and sustainable
solutions and set trends usingmulti-focused approaches towards
shaping national education,employment opportunities,
in-home supports and healthcarethat affects the lives of
individuals with disabilities.
For more information aboutprograms and services Abilities
in Motion provides call610-376-0010, or visit our
website at www.abilitiesinmotion.org.
Shelly (22:06):
Welcome back listeners.
And we are here with TiffanyWedekind and she has Progeria,
but we're going to shift theenergy a little bit.
And we're going to talk aboutyour eclectic style and y our, y
our amazing unicorn like energy.
A nd, and I want you to tell us,u m, about your business and
what you love most about thelife that you have.
Tiffany (22:29):
Okay.
Well, my business, my businessis Wanderlust Studio and I
created this studio out of,well.
I needed a brick and mortar formy candles.
I started a company calledRecycledKarma years ago, um,
(22:49):
making candles out of beer, wineand liquor bottles, recycling
them.
And I was able to build thisshop.
Um, but I wanted to include, Ididn't want it to just be a
candle shop.
I wanted it to include all myartist, friends and everyone in
(23:10):
the community.
That was an artist.
Uh, when I first moved in thisbuilding, this neighborhood is a
little rundown.
And I noticed there was a signacross the street that said,
this corner started the artwalk.
And I was like, oh, there's noart down here.
So I'm going to make it happen.
And so I that's what I did.
I have, um, a gallery showingevery month we host a new artist
(23:37):
in the community every month andhave a show for them.
And all the vendors in my shopare local, uh, local artists,
local vendors, all sorts ofstuff.
I am honey.
I have art.
I have body products.
I have my clothing that I do mylittle clothing line, but yeah,
and we have yoga.
(23:58):
I incorporated my love of yoga,um, and want to inspire people
to take care of themselves, notjust physically, but mentally
art to me is an outlet.
Um, it's very healthy.
It gets your brain working.
It very therapeutic.
So I really wanted toincorporate art a nd holistic
(24:21):
health.
And that's what I did.
Shelly (24:24):
That's perfect.
And it encompasses all of yourlife.
So this makes you very happy andyou're living, I think your best
life, really?
Tiffany (24:31):
This is my best life.
That's why so awesome aboutlife, this life, we can have so
many different lines, so manydifferent lives.
And that is really what I haveheld on to.
Shelly (24:43):
Yeah.
So this is the life you've chosefor yourself.
And your life is amazing.
Tiffany (24:48):
I manifested this when I was 19, there is a shop down
on campus.
It was called Bizantiumsandthere was King Avenue Coffee
House attached to it.
And they were going, you couldwalk in between the two.
Okay.
And I would go there all thetime.
I order my little coffee.
Then I go and shop and get somebeads because I used to make
(25:08):
necklaces and all that.
And I swear when I was at, I waslike, I'm going to get my, I'm
going to have my shop and I'mgoing to live up above it.
And guess what?
Shelly (25:18):
Y ou do.
Tiffany (25:18):
I live upstairs.
Shelly (25:20):
Nice.
Do you feel the love and theenergy from your shop in your
apartment?
Does it come up through?
Tiffany (25:29):
Yeah.
And you know what?
People can feel it coming downbecause anyone that comes in
here, they feel it.
I get all the time that-thisplace just so cozy.
I love the vibe.
I love the atmosphere and it's,it's me.
I mean, I have a businesspartner, but really I've put a
lot of love into what I do.
(25:51):
And I really just try to, I tryto give everyone a big hug,
right?
Not just physically, but it, itreally lights me up.
When I see young artists come inhere and they display their work
and they get so excited thatpeople buy it and that people
(26:12):
are interested in it.
And I'm like, you don't knowwhat people are gonna like,
right?
There are so many kinds of, uh,mediums and textures and things
that people do painting.
Like when some peopleincorporate them in together.
Um, I just really wanted toinclude all of my community
(26:34):
because we have a lot oftalented people in Columbus.
And I just wanted them to have aplace to come.
Shelly (26:40):
Are you doing anything special for the holidays this
year?
Wrapping up the year?
Tiffany (26:45):
Yes.
Yeah.
Shelly (26:46):
For December.
What's going on in December?
Tiffany (26:48):
Yeah, I have.
I'm always, I always have thingsgoing on.
We have, so this summer Iactually created a market, a
Saturday market.
I had a lot of fun.
And for the holiday, I'vethought on Shop Small Saturday,
which is this 27th of Novemberinstead of Black Friday, I hate
(27:11):
Black Friday because I justthink it's, you know, it's
really ridiculous.
So I was like, yo, what?
We need to support localbusiness.
And so let's, let's do a marketon Shop Small Saturday.
So that's what I did.
So next Saturday from noon tosix and Marion Village, we will
have our Shop Small HolidayMarket.
(27:31):
And I had a handful of vendorscoming out and it's just a
chance for people to come outand shop local.
Shelly (27:38):
What street is it on?
Tiffany (27:41):
It will be on South High Street is actually at
Austin and Company.
It's, uh, I, again, with my loveof the community, I partnered
with a lot of local surroundingbusinesses.
So yeah, we're going to havethat there and it's going to be
fun and I'm looking forward toit.
Shelly (28:01):
Nice.
You had a quote on one of yoursocial media pages and I wanted
to share it with our listenersbecause I loved it.
So I'm going to steal it for themoment.
So the quote is,"there are somany things that encourages
one's existence.
When you let go of everythingthat stands in your way of
living and walk in alignmentwith your true purpose, you will
(28:21):
become unstoppable," by TiffanyWedekind.
So I, yeah, and I want all ofour listeners, cause we, we have
so many listeners worldwide.
And my purpose of this podcast,every, every time we have an
episode is to create a family ofevery disability, mental or
(28:41):
physical and, and show them thatthey're not alone.
You know, I have people inEthiopia, I have people in New
Zealand.
I have people, you know, in thetiniest of countries that I've
never even heard of listen tothis tiny little podcast of
ours.
And, you know, there might besomebody out there with Progeria
that doesn't even know that theyhave Progeria, but something,
(29:01):
something with today's episodemay click with them and realize
that they have a, some sort oflittle family worldwide and that
this, this is how amazing theirlife can be if they choose to
yeah.
To have it this way, I want ourlisteners to find you and reach
out and connect with you for allkinds of reasons.
So can you tell us whereWanderlust Studios is and uh,
(29:24):
what other kinds of social mediayou are on?
Tiffany (29:28):
Yes.
Wanderlust Studio is in MarionVillage, Ohio located at 1603
South Fourth Street.
And the Instagram is@WanderluststudioCbus
Shelly (29:40):
So our time up for the day, but thank you so much.
Absolutely.
Being here today and educatingus and entertaining us.
Tiffany (29:48):
I hope to be on again.
Shelly (29:49):
Absolutely.
I think for now we need to do aunicorn Wednesday dance.
(Dancing and singing)
Tiffany (29:55):
Oh, woot, woot! That's right.
(laughter)
Shelly (30:01):
And with that, I will say thank you to Tiffany for
being here today and thank youto our listeners worldwide for
listening.
Don't forget to hit that likeand subscribe button.
So you never miss an opportunityto listen to DisAbility Talks.
Music (30:34):
[inaudible]
Outro (30:38):
Thanks for tuning in to this episode of disability.
Talks want to keep theconversation going?
Then visit our website atAbilitiesinmotion.org, or
connect with us on social media.
And remember don't dis myability.
Welcome to DisAbility Talks, a podcast produced by
Abilities in Motion.
I'm your host, Shelly Houser.
Join us for real conversationsand no nonsense talk from
everyday people withdisabilities, living their most
independent everyday lives.
Tune in for the latest newssurrounding disability,
accessibility, and independence.
Where conversations aren'tdissed and stories that need to
(00:23):
be told aren't missed.
So let's talk.
Shelly (00:28):
One of the world's lesser known disabilities is
Hutchinson's Guilford syndromealso known as progeria.
I first learned about thissyndrome in college and found it
fascinating what the human bodycan do.
So I reached out to our nextguest to take a deeper look at
this rare disability and ask herwhat her one and 18 million life
is like.
Please, welcome to the show.
Tenacious, Tiffany Wedekind andgood morning.
Tiffany (00:51):
Hello Shelly.
Thanks for having me.
Shelly (00:53):
So you join us from up a few states from Pennsylvania.
So I am super excited to haveyou, because I asked around the
office to my coworkers to seewho had heard of Progeria.
So not a lot of people did.
So I think you and I have somework to do for my coworkers and
our listeners worldwide.
So explain to our listeners whatProgeria is.
Tiffany (01:17):
So Progeria is a very rare rapid aging disease, and it
affects roughly 350 people inthe world.
And I happened to be one ofthem.
Shelly (01:31):
Lucky you.
Tiffany (01:32):
I know!
Shelly (01:34):
You are, you are the unicorn, Tiffany.
Tiffany (01:36):
I, uh, yes I am because I am an anomaly within my
anomaly.
Shelly (01:43):
How is that?
Tiffany (01:44):
Well, because I typically the age, um, for the
life expectancy for patientswith Progeria is roughly 13
years, seven, 13 years of age.
Some of them live older, um, dueto the, you know, new treatments
and things like that.
(02:05):
Um, the patients are livinglonger, but typically the life
expectancy is about 13 years ofage.
And I am 44 this year.
Just to take you through theland of Progeria, it's a genetic
disorder, it's a mutation.
And one of the genes thatelement a gene, and typically
(02:27):
when, uh, patients are born withProgeria, you see that very
early in life as early as a yearold, sometimes even at birth, my
symptoms developed later in lifearound the time that I hit
puberty.
So typically when patients aredying of this disease, I was
(02:48):
just literally getting startedin my life and I was having
difficulties, but they did notknow what it was.
So I am rare because I am one in50 million and even more so
rare.
My mom has the disease and mybrother had the disease, but he
(03:09):
passed away 10 years ago fromit.
So not only one of us had it,three of us had it even more
unheard of my mom has it.
Shelly (03:19):
But you were saying to me, yeah, y ou d id.
She doesn't present visuallylike the typical Progeria
patient.
N o.
Does she have any physicalsymptoms?
Tiffany (03:30):
Um, you now that when you look at her, you can see now
that we know, cause I look a lotlike my mom, but her body, she
started developing issues veryearly, but one of the things
with Progeria, the things that'snoticed is early on hairline was
(03:55):
small, a small phase, small, uh,facial features.
And she didn't have any of that.
When she got around, I wouldsay, I want to say in our late
forties, maybe I know, Iremember her being in an
(04:17):
accident at her back and theythought for the longest time it
was her back.
It was her back.
So they did all these backsurgeries to come to find out.
It wasn't her back at all! Itwas h er hips.
She had dysplasia a nd she hadto get both of her hips
replaced, b ut see, that's whatit h ad even like for me growing
up.
And I know it was like that f ormy brother.
(04:37):
I feel like an experimentsometimes because they don't
know all growing up because theyhad no idea about Progeria.
And they thought we were evenseen at genetics doctors early
on b ecause we were small.
But then growing up, like, so mybrother broken both of his femur
(04:58):
bones, hardest bone in your bodyto break.
They knew then like, whoa,what's that?
That's not normal.
So, so many things growing uplike our teeth.
My God, I've had issues with myteeth since I was seven years
old, they were pulling my teethbecause my baby teeth wouldn't
come out.
They had no idea why that washappening.
(05:21):
But all through my life, I was in b races for five, six years,
which is not normal.
Also.
Then I g et all my teeth pulled.
I now h ave, you know, justrecently, l ast two years, they
took all the rest of my teeth.
I mean, t hat's p retty smile.
Shelly (05:40):
You do, that's great smile.
Tiffany (05:41):
So it has been, they, so they haven't known how to
really treat us.
I guess.
Shelly (05:50):
Do Progeria patients typically have more brittle
bones?
Is that part of it or you don'tknow?
Tiffany (05:57):
Yeah! Issues with their joints, hips, arthritis,
dysplasia.
I mean, I have those things thatare wrong with Me.
I mean, you can't, you can'tsee, but you c an see my hands
are just, they h urt.
Shelly (06:08):
The knuckles.
The knuckles are proitrudinglike arthritis.
Tiffany (06:10):
Very little fat body fat.
So seeing that as they develop,you know, that's what they see
at first.
But then as they d eveloped evenyoung seven years old, they're
having strokes.
They're having issues with heartdisease, issues with hearing
loss, vision impairment, notbeing able to walk.
(06:33):
So I don't know why we developed the, w hen my brother
had a much worse than I didgrowing up and he passed away.
He was 39, but he had his firstopen heart surgery at 30 that's
what really triggered to findout, dive deep into like, okay,
he's having all these b rittlebones, he's got shortened
(06:55):
stature.
They even put my brother ongrowth hormone, which ended up
that growth hormone specificallywas causing defects a nd
children that they were givingit to.
So I don't know if that maybeup'd t o h is risk factor, but
you know, they didn't know.
They really started to try tofigure out well what's going on.
(07:19):
And Dr.
McBride is actually the onefinding the result that, not
him.
He had to send our blood w ork out.
I believe they sent it out tothe University of Washington.
U m, and I did a lot ofextensive research and it came
back that this i s what we had.
U m, but that was after like Ididn't get diagnosed until I was
(07:40):
in my late twenties, which kidswith progeria get diagnosed w
ithin their first year of havingit.
So I had a chance to live mylife, try and live my life.
Like everybody else has beenliving, but at the same time,
(08:01):
struggling in the processbecause they don't know how to
treat.
They did not know how they knowmore about it now they know more
about the u nderlying issues andthings that they can treat that
way, like cardiovascular diseaseand at the cardiologist between
the c ardiologist and thevascular doctor, I'm there every
six months.
(08:22):
Someone's looking at me!
Shelly (08:24):
Are you a part of this community of support worldwide?
Tiffany (08:27):
Yes!
Shelly (08:28):
Tell us about that.
What do you guys do for eachother?
Tiffany (08:31):
So I have just over, I would say these last two years
really gotten to know a lot ofpeople in the progeria community
because I, myself work closelywith, um, the Progeria research
foundation, which is head byLeslie Gordon in Massachusetts.
And the reason why she startedthe foundation is she had a son.
(08:52):
You can look him up t oo.
His name is Sam Burns.
He did a Ted talk.
I believe he passed away when hewas 18, 19.
U m, shortly after h e graduatedhigh school, I reached out to
them letting them know, likeafter it came back from the
genetics stating, yes, this iswhat our research has.
(09:15):
I reached out to them, lettingthem know of my family.
And at first they were a sort oflike, oh, you probably have
Warner's syndrome.
I'm like, m m, n o, all three ofus have Progeria.
And they were just like WHAT??!
Shelly (09:32):
They were dumbfounded.
Tiffany (09:32):
They were really excited about that because they
had never, that was unheard offor them.
So we, my mom and I, and w hileI technically my brother too,
because they h ave him, they canregenerate his cells over and
over and over and over again atchildren's hospital.
I know if you look at m y, ifyou watch my documentary, I did
(09:55):
not know that.
And then I discovered that and Iwas like, my brother he's in
here?
Shelly (10:02):
He's still there.
But part of him,(laughter)
Tiffany (10:06):
Right?
Like his cells, but they can usethose cells to do further
research, just mind-blowing tome.
So we reached out to them.
They, you know, quickly got onthe phone with us.
And next thing you know, it, weare, I raised money for them
(10:27):
through my business often on aregular basis.
But my mom and I, we donated ourDNA for them to research.
I believe right at the time thatwe did that they were starting
to research the p rogesteronelevels.
Which Progeria comes from, Idon't know if it comes from the
(10:49):
name, but we all h ave progerenand i n our blood, it gets
filtered out because we all age.
Right?
So the progeren filters outtypically at a, I would say
faster pace, which causes us to,you normal people to age at a
(11:12):
slower pace.
Ri ght?
So the progeren an d o ur bloodgets gooped up in the cells and
doesn't get released like it'ssupposed to.
Which causes the rapid aging.
So if you think about it and theresearch that they're doing
right now, if they find a curefor what we have, which is
Progeria, I just th ink Hutinson-Guilford syndrome, th
ey're o n the path to findingthe cure for what do you think?
Shelly (11:36):
Aging?
Oh, aging in general, you aregoing to be the fountain of
youth!
Tiffany (11:43):
I feel like the fountain of youth.
Shelly (11:43):
You act like the fountain of youth.
So do you think that they'restudying you and your mom and
your brother, because the threeof you, A, the three of you have
it together as a family and B,which is an anomaly, but then B
also you guys have all livedlonger than the normal expected.
Tiffany (12:03):
Yes.
Shelly (12:04):
Life cycle.
So if anything else, they couldprolong the life expectancy.
Tiffany (12:11):
Correct, Yes.
It, which is what they're doingnow.
They have new, um, they have adrug that now it was recently
approved by the FDA.
It's called Lornafarnib.
I believe the drug name nowZelinski, but as Lornafarnib and
I was on it for a short time.
I tried, but in the side effectsfor me were just, I had to, I
(12:34):
had to really weigh out, what doI want it to be?
Do I want to now have the ideathat I'm going to live a little
longer?
But I'm going to feel like crapthe whole time?
Or am I just going to take mychances?
I'm 44 years old.
I've made it this far,so far.
I'm in good health for the mostpart.
(12:56):
I mean, I do have issues, butwhen I look at the kind of
issues that the typical patienthas, I have to be very thankful
that I can get up every day anddo whatever I want, because
that's how I've made my life.
It wasn't always like that.
Shelly (13:13):
Yeah.
But one thing you're seriouslyinto is yoga.
Tiffany (13:16):
Yeah.
Shelly (13:16):
And you post a lot of yoga.
H ow, how does that work for youh olistically?
Tiffany (13:22):
Oh, I've been doing yoga for a very long time.
Actually the woman thatinstructs, uh, one of my
instructors here in my studiohas been my instructor
personally for the last 16years.
And I've always been a healthygirl and that just got, you
know, as I got older, I don'teat fast food and it sorta has
(13:43):
stuck with me.
Um, but yoga keeps me strong.
My body strong.
It keeps me flexible.
Um, and both physically andmentally, because I am someone,
you know, again, I growing up, Isuffered, um, with things like I
was a hyper child.
(14:04):
Yoga to me really helps me.
And well, not just thecardiovascular wise, it, we do
so many exercises, um, in yoga,different kinds of moves and
positions.
And we focus on our breathing.
That is so important.
People don't understand a lot of, you know, I hear people are
(14:26):
like, oh yeah, this bad, no yogais a way of life.
Whether you want to do it ornot, sometimes you gotta find
something that works for you andstick with it.
Like my cardiologist told me,Tiffany, whatever you're doing,
you keep doing it because youare consistent.
So yoga to me helps me stayconsistent.
(14:50):
It, I mean, breathing isimportant.
That helps me, circulation just,it keeps my body mobile.
I mean, with all the arthritisand things that I have, I mean,
I'm not sitting here putting myleg behind my head, but I'm
doing things that I can do.
I, you know, I have my limits,but it keeps me, it keeps me
(15:13):
very healthy and strong,physically and mentally.
Because I need to calm down.
You don't even know me, but I'msure you're, you can feel like
energy.
Do your little life fell inthere.
Shelly (15:27):
Well, I even feel your energy following you on social
media, because you're alwaysgoing out with your friends and
you're always out dancing andyou're always trying new,
fabulous, eclectic clothes.
Tiffany (15:39):
Yeah.
Well, I'm not always out dancingthough.
I think my dancing out days areover, but I am dancing.
Well, now you get older.
I look, I don't belong in a clubthese days.
Shelly (15:57):
I think you and I are both a little older for the
clubs, but,
Tiffany (16:01):
Um, like I want to be in bed when it's dark.
But I do, I love fashion.
I actually just started my ownfashion line to Lululmoon and I
do upcycling and differentthings, but I've always been a
fashion kind of girl.
And I liked dressing people uplike that too.
(16:26):
It's very boho.
It goes with my, my spiritbecause that's how I started.
I live my life every day is anadventure for me.
It really truly is.
I mean, I have my good days andmy bad days, like trust.
I mean, you see me that I'mbubbly all the time, but I have
bad days.
I definitely have bad days, butI don't let people see that
(16:48):
because I, I think, I feel likeI was born to inspire people.
Like I really feel like nowlater in my life, all the things
that I bumped, like POrogeriaside life has been tough for me
because I'm different.
I'm just a different person.
(17:10):
Some people are inspired bythat.
Some people see an opportunityby that.
And that's just the way it'sbeen.
But I definitely feel like now,like once I got divorced, I got
divorced four years ago andvery, very, very hard for me to
do.
But I do feel like now Iwouldn't be where I am right
(17:30):
now.
If I had not done that and letgo of all of that.
Cause that's what was standingin my way.
I was trying to make otherpeople happy and not even
considering myself on a dailybasis.
Shelly (17:44):
And what made you happy,?
Tiffany (17:44):
What made me happy?
Shelly (17:47):
You had to make yourself happy first.
Tiffany (17:49):
Yeah.
And I didn't know what I wasgoing to do.
Like I called my brother and Isaid, Hey, I'm ready to go.
And I was like, if you don'tcome now, just hurry up and come
now before I changed my mind andhe was like, well, I'll be there
in 15 minutes!
Shelly (18:05):
Be out on the curb.
Tiffany (18:07):
I remember shortly after that, I was laying in bed
at my parents and staring at theceiling going, okay, now, what
am I going to do?
Like, I was a wife.
I was a mom.
I, uh, I've done.
Okay.
Done what I thought I wassupposed to do.
You know, I made a fan, blah,blah, blah.
So now what am I gonna do?
(18:27):
And just something went off inmy head.
And I said, I'm going to tellthe world who I am.
I'm going to tell the world whoI am.
I don't know how I'm going to dothat, but I'm just going to do
it.
That's when I created TenaciousTiffany.
Shelly (18:40):
Yeah.
And that's what I wanted you onthe show.
And that's why I've beenfollowing you for so long,
because I wanted this time onour show to give you a voice.
Tiffany (18:49):
Yeah.
Shelly (18:49):
To tell the world what Progeria was, because it is so
important and there's millionsof other disabilities, but this
one is so amazingly unique.
A nd, and I look at otherProgeria patients and I think in
some way, t hey're, they'rebeautiful.
And they h ad t his certainbeautiful,
Tiffany (19:07):
And they're all happy.
Shelly (19:09):
Yeah.
They have this beautiful littleaura about them.
Tiffany (19:11):
Do you notice that they're all happy?
They're all smiling.
Shelly (19:15):
They're living their best for the time that they have
on this planet.
Tiffany (19:19):
And they get that.
Shelly (19:20):
Yeah.
Tiffany (19:20):
That's, what's the difference?
Like, so growing up, I didn'tlike, again, I didn't know that
I had Progeria.
I didn't know that i t hadanything.
Shelly (19:28):
Right.
Tiffany (19:28):
I just thought it was different.
Shelly (19:29):
Right.
Tiffany (19:30):
I was just developing different.
So I accepted that very early inlife.
And then when I found out that Iactually had something that
could, like, when I saw, whenthey told me I had Progeria, I
said, just so what does thatmean?
They were like, we have no idea.
They don't know for you.
Like it could be like, we don'tknow.
(19:51):
We have nothing to tell you.
So that just even more so when Iwas in that transition period of
my life, I was like, you knowwhat?
I really just, and I was scared.
I was very scared to tell peoplethat I had a disease because I
said, well, that's going to openup a whole different can of
worms for me when peopleactually knowing something is
(20:12):
wrong, you know?
Cause I get asked on a dailybasis.
You would not believe the kindof questions that I get asked.
Right?
So now I'm just like, Google it!You can Google it now.
Youtube to explain it!.
Now go figure it out, educateyourself.
,,, Yeah.
But I really want to, um, Ireally feel like now I, and not
(20:36):
only just tell people about thedisease, it's the disease that I
have.
It, it it's rapidly people under, uh, th they, they wonder why
I'm just so on the go all thetime.
Go, go, go, go let Tiffany can'tyou just relax?
No, I can't relax.
I'm rapidly living my life.
(20:58):
Okay.
Because I don't know what'sgoing to happen to me.
And I don't know, one day I'mgonna wake up and go, Oh God I
can't move.
And I wish I would have donethat when I could move.
So I'm going to do, I'm going todo whatever I want.
I'm going to do whatever I can.
And I want people to understandthat your life can be gone in a
(21:23):
flash of an eye.
Like it's still surreal that mybrother is gone.
Like, I don't believe that he'sin the ground.
That's not where he is.
Right?
Shelly (21:32):
Right, right.
Tiffany (21:33):
So people don't get it.
Don't appreciate it when it'sgone.
Get, appreciate it now.
Shelly (21:39):
Exactly.
I think that is a perfect timeto take a commercial break.
We'll be back.
Ad (21:43):
Abilities in Motion is one of Pennsylvania's premier
centers for independent livingexisting to educate, support,
and promote individuals withdisabilities.
Our programs are focused onproviding opportunities for
individuals with disabilities tolive independent,
self-determined lives.
Abilities in Motion advocatesfor local, state, and national
laws that protect the rights ofpeople with disabilities.
We are proud to createinnovative and sustainable
solutions and set trends usingmulti-focused approaches towards
shaping national education,employment opportunities,
in-home supports and healthcarethat affects the lives of
individuals with disabilities.
For more information aboutprograms and services Abilities
in Motion provides call610-376-0010, or visit our
website at www.abilitiesinmotion.org.
Shelly (22:06):
Welcome back listeners.
And we are here with TiffanyWedekind and she has Progeria,
but we're going to shift theenergy a little bit.
And we're going to talk aboutyour eclectic style and y our, y
our amazing unicorn like energy.
A nd, and I want you to tell us,u m, about your business and
what you love most about thelife that you have.
Tiffany (22:29):
Okay.
Well, my business, my businessis Wanderlust Studio and I
created this studio out of,well.
I needed a brick and mortar formy candles.
I started a company calledRecycledKarma years ago, um,
(22:49):
making candles out of beer, wineand liquor bottles, recycling
them.
And I was able to build thisshop.
Um, but I wanted to include, Ididn't want it to just be a
candle shop.
I wanted it to include all myartist, friends and everyone in
(23:10):
the community.
That was an artist.
Uh, when I first moved in thisbuilding, this neighborhood is a
little rundown.
And I noticed there was a signacross the street that said,
this corner started the artwalk.
And I was like, oh, there's noart down here.
So I'm going to make it happen.
And so I that's what I did.
I have, um, a gallery showingevery month we host a new artist
(23:37):
in the community every month andhave a show for them.
And all the vendors in my shopare local, uh, local artists,
local vendors, all sorts ofstuff.
I am honey.
I have art.
I have body products.
I have my clothing that I do mylittle clothing line, but yeah,
and we have yoga.
(23:58):
I incorporated my love of yoga,um, and want to inspire people
to take care of themselves, notjust physically, but mentally
art to me is an outlet.
Um, it's very healthy.
It gets your brain working.
It very therapeutic.
So I really wanted toincorporate art a nd holistic
(24:21):
health.
And that's what I did.
Shelly (24:24):
That's perfect.
And it encompasses all of yourlife.
So this makes you very happy andyou're living, I think your best
life, really?
Tiffany (24:31):
This is my best life.
That's why so awesome aboutlife, this life, we can have so
many different lines, so manydifferent lives.
And that is really what I haveheld on to.
Shelly (24:43):
Yeah.
So this is the life you've chosefor yourself.
And your life is amazing.
Tiffany (24:48):
I manifested this when I was 19, there is a shop down
on campus.
It was called Bizantiumsandthere was King Avenue Coffee
House attached to it.
And they were going, you couldwalk in between the two.
Okay.
And I would go there all thetime.
I order my little coffee.
Then I go and shop and get somebeads because I used to make
(25:08):
necklaces and all that.
And I swear when I was at, I waslike, I'm going to get my, I'm
going to have my shop and I'mgoing to live up above it.
And guess what?
Shelly (25:18):
Y ou do.
Tiffany (25:18):
I live upstairs.
Shelly (25:20):
Nice.
Do you feel the love and theenergy from your shop in your
apartment?
Does it come up through?
Tiffany (25:29):
Yeah.
And you know what?
People can feel it coming downbecause anyone that comes in
here, they feel it.
I get all the time that-thisplace just so cozy.
I love the vibe.
I love the atmosphere and it's,it's me.
I mean, I have a businesspartner, but really I've put a
lot of love into what I do.
(25:51):
And I really just try to, I tryto give everyone a big hug,
right?
Not just physically, but it, itreally lights me up.
When I see young artists come inhere and they display their work
and they get so excited thatpeople buy it and that people
(26:12):
are interested in it.
And I'm like, you don't knowwhat people are gonna like,
right?
There are so many kinds of, uh,mediums and textures and things
that people do painting.
Like when some peopleincorporate them in together.
Um, I just really wanted toinclude all of my community
(26:34):
because we have a lot oftalented people in Columbus.
And I just wanted them to have aplace to come.
Shelly (26:40):
Are you doing anything special for the holidays this
year?
Wrapping up the year?
Tiffany (26:45):
Yes.
Yeah.
Shelly (26:46):
For December.
What's going on in December?
Tiffany (26:48):
Yeah, I have.
I'm always, I always have thingsgoing on.
We have, so this summer Iactually created a market, a
Saturday market.
I had a lot of fun.
And for the holiday, I'vethought on Shop Small Saturday,
which is this 27th of Novemberinstead of Black Friday, I hate
(27:11):
Black Friday because I justthink it's, you know, it's
really ridiculous.
So I was like, yo, what?
We need to support localbusiness.
And so let's, let's do a marketon Shop Small Saturday.
So that's what I did.
So next Saturday from noon tosix and Marion Village, we will
have our Shop Small HolidayMarket.
(27:31):
And I had a handful of vendorscoming out and it's just a
chance for people to come outand shop local.
Shelly (27:38):
What street is it on?
Tiffany (27:41):
It will be on South High Street is actually at
Austin and Company.
It's, uh, I, again, with my loveof the community, I partnered
with a lot of local surroundingbusinesses.
So yeah, we're going to havethat there and it's going to be
fun and I'm looking forward toit.
Shelly (28:01):
Nice.
You had a quote on one of yoursocial media pages and I wanted
to share it with our listenersbecause I loved it.
So I'm going to steal it for themoment.
So the quote is,"there are somany things that encourages
one's existence.
When you let go of everythingthat stands in your way of
living and walk in alignmentwith your true purpose, you will
(28:21):
become unstoppable," by TiffanyWedekind.
So I, yeah, and I want all ofour listeners, cause we, we have
so many listeners worldwide.
And my purpose of this podcast,every, every time we have an
episode is to create a family ofevery disability, mental or
(28:41):
physical and, and show them thatthey're not alone.
You know, I have people inEthiopia, I have people in New
Zealand.
I have people, you know, in thetiniest of countries that I've
never even heard of listen tothis tiny little podcast of
ours.
And, you know, there might besomebody out there with Progeria
that doesn't even know that theyhave Progeria, but something,
(29:01):
something with today's episodemay click with them and realize
that they have a, some sort oflittle family worldwide and that
this, this is how amazing theirlife can be if they choose to
yeah.
To have it this way, I want ourlisteners to find you and reach
out and connect with you for allkinds of reasons.
So can you tell us whereWanderlust Studios is and uh,
(29:24):
what other kinds of social mediayou are on?
Tiffany (29:28):
Yes.
Wanderlust Studio is in MarionVillage, Ohio located at 1603
South Fourth Street.
And the Instagram is@WanderluststudioCbus
Shelly (29:40):
So our time up for the day, but thank you so much.
Absolutely.
Being here today and educatingus and entertaining us.
Tiffany (29:48):
I hope to be on again.
Shelly (29:49):
Absolutely.
I think for now we need to do aunicorn Wednesday dance.
(Dancing and singing)
Tiffany (29:55):
Oh, woot, woot! That's right.
(laughter)
Shelly (30:01):
And with that, I will say thank you to Tiffany for
being here today and thank youto our listeners worldwide for
listening.
Don't forget to hit that likeand subscribe button.
So you never miss an opportunityto listen to DisAbility Talks.
Music (30:34):
[inaudible]
Outro (30:38):
Thanks for tuning in to this episode of disability.
Talks want to keep theconversation going?
Then visit our website atAbilitiesinmotion.org, or
connect with us on social media.
And remember don't dis myability.
Popular Podcasts
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.