May 4, 2024 • 15 mins
Two mothers on the South Coast of Massachusetts are teaming up to help children with special needs enjoy the outdoors like so many other kids do: biking! Alissa DeSousa and Lindsay Best-Greenspan both have children with special needs, and they were able to see first-hand the difference adaptive bikes made in the kids' lives. Now, they're on a mission to make sure as many children as possible can have access to one. They join Nichole this week to talk about their efforts, their inspiration, and how you can help them reach their goal.
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(00:07):
From WBZ News Radio in Boston.This is New England Weekend. Each week
we come together, we talk aboutall the topics important to you and the
place where you live. Great tobe back with you. Of course,
as always, I'm Nicole Davis.For children who have special needs, access
to adaptive toys can really be agame changer. It's not just about play,
although of course that's important. It'sabout inclusion, independence, and you
(00:31):
know, just being a kid likeany other child. Two mothers on the
South Coast have been united by theshared experience of raising kids who have special
needs, and now together they're makingit their mission to make sure children all
over southeastern mass are not being heldback from the joy of being on a
bike just because of their physical abilities. Alyssa Desusa and Lindsay Best green Span
are here. We're going to talkabout rare Riders their mission. Ladies,
(00:54):
thank you so much for your timeon the show. Alyssa, we will
start with you here. Tell usa little bit about your story. I
guess we'll go with that first,and how you met up with Lindsay to
make this happen. Back in twentytwenty, my son was a student at
the Short School in Dartmouth, andhis physical therapist had sent home a picture
(01:15):
of him riding an adaptive bike atschool and she said how much he loved
it and how it was really greatas a physical therapy device, but that
insurance doesn't cover it, so welooked into purchasing it out of pocket and
we were shocked to find out thatit costs almost five thousand dollars, which
is incredible. Yeah, not quitelike running to Walmart and picking up a
(01:40):
bike off the shelf that you wouldwith a typical kid. So I jokingly
posted the picture on Facebook and Isaid, here's to hoping Santa can find
five thousand dollars before Christmas. Haha ha, And a friend of mine
said, well, maybe Santa isyour friends and family. We're gonna money
(02:00):
and try and get Zaye a bike. And before the end of the day,
they had created a GoFundMe that coveredthe costs of the bike plus some
and we were just amazed at that, and we knew that Lindsay's son,
Tanner, who also was in schoolwith Zane, would also benefit from a
bike. And we said, hey, if we have this extra money,
(02:23):
do you mind if we put ittowards the bike for Tanner, and our
friends and family were like, yep, here we go, and they raised
enough for Tanner to get a bikeas well before the end of the next
day. So in twenty four hoursthey had they had raised the funds for
us to purchase two adaptive bicycles forour boys. So Lindsay and I cried
(02:43):
a lot. Sure there might havebeen some ugly line. Yeah, ugly
crying. We were so so happyfor our kids and just overwhelmed that our
friends and family wanted to do somethingso wonderful for our kids. So we
said that we were going to payit forward, and we were trying to
(03:05):
think of how to do that,and Lindsay and I came up with the
idea that we would create a bikergang of kids with special needs who need
these adaptive bikes, whose families can'tfigure out a way to make that a
thing. And we decided to callthem the Rare Riders in honor of their
rare genetic disorders. I love that, and honestly, what a way to
(03:30):
turn it around. And first andfirst and foremost here your friends and family
are incredible, and you know,congratulations to you all for surrounding yourselves with
like such good people. I mean, that's phenomenal. But Lindsay, let's
kind of get into a little bitof the nitty gritty about these bikes.
Why do these bikes cost so much? Like? What is an adaptive bike
for people who might not be familiar. So, an adaptive bike is essentially
(03:53):
like a tricycle if you look atit. By looking at the bike,
it doesn't really look that complicated.But then when you look a little bit
closer, you see that the pedalshave straps, and then kids like Zane
need more support, so there're strapsand the seats that help him sit upright.
The seats are also not just likeregular bike seats which are super tiny.
(04:15):
They are almost like chairs where theyhave a larger bottom and a larger
supportive back to help keep the kidssitting up right. Each kid has a
different level of need, so thebikes are also modified for each child's need.
Even with the difference between Zane andTanner, Zane needs a little bit
more physical support to help him,so his bike was actually more expensive,
(04:39):
where Tanner is a little bit moremobile so he doesn't need as much support.
And the other great thing about thisbike is that the children start to
learn that motor movement memory by havingtheir feet strapped into the pedals and the
pedals move as we can propel thebike, but the kids can also propel
the bike themselves, and we canhelp them stee the bike. So it's
(05:00):
those foundational skills that other children haveand are able to access, but our
children can't. And typically, wheneveryou put a special adaptive equipment label on
anything, the price quadruples a regularprice of something. So it's really it
becomes difficult as a special needs parentwhen you're buying all this extra equipment for
(05:21):
your child. It's extremely expensive.Oh sure, and frankly, you know
it's got to take a toll onthe family budget, but it's also got
to take a toll on mental healthand emotional health because you just want your
kid to have the same experiences asall the other kids, right, and
being able to get out there andbe on the bike and just feel the
wind in your hair and have thatsense of independence. Alyssa, talk to
(05:44):
us about how your children have growninto these bikes and what the bikes have
been able to do for them.So when Zane first got his bike,
he could barely self propel it wasmajority of the time of standing behind him
giving him gentle nudges. Our drivewayhas a slight incline, so that made
it a little bit easier. Andnow two years later, he is able
(06:06):
to pedal his bike around school threefour laps at a time without much assistance.
Sometimes he drives it to a wall. But my older son does that
too, so I don't know ifthat's just a kid. I think that's
like part of life. Yeah,oh man, what about Tanner? How's
(06:28):
he doing on his bike? Tanner'sdoing really well. So when he first
got his bike, he was ableto make a few rotations of the pedals
independently, and now he is definitelyable to propel himself around the driveway and
down the street. And what italso allows him to do is engage in
a recreation activity with his others.So before it was usually just kind of
(06:50):
him watching his brothers from the windowor sitting in the driveway and watching his
brothers ride their bikes. But nowhe can ride around with them, and
that is basically one of the biggestreasons for why we want these bikes for
the boys is that they can dothings with their siblings and their friends.
And their family and be one ofthem and feel like they're one of them.
(07:11):
It's a very expensive, normal scenethat you wouldn't expect that it would
cost that much for our kids todo something together. But I can't recommend
it enough. Finding something that yourkids can do together that as a specialty's
family, we didn't think was possible. Yeah, and there's plenty of other
families out there who are in thesame boat, and with rare riders,
(07:31):
hopefully you can reach many of them. And how are you trying to do
that at this point? What areyou doing for community outreach? Our secret
project has been to donate a biketo the community to use on the fair
Haven Bike Trail and the surrounded andpaved areas. We realized that these bikes
(07:54):
are large, they do not foldeasily, they are difficult to store or
especially if you don't have a shedin your backyard or if you live in
an apartment, it's not something thatyou could carry upstairs. So we decided
that having a bike in the communityfor hundreds of people to have access to
(08:16):
would be the best way to sharethe love. Really, so we're working
closely with the fair Haven Commission onDisability on the logistics of it, and
we're hoping to get that ball rollingvery soon. Beautiful, And obviously there's
plenty of people on the South Coastwho might be in the same situation.
So lindsay, what are you doingwhen it comes to further outreach? Are
(08:37):
you looking to move outside of fairHaven? I know you're from Dartmouth and
East Freetown respectively. What are youplanning on doing for the future. So
our plan is to donate at leastone bike to a child within the South
Coast every single year. This yearwe were able to give a bike to
our first recipient, and we havean application process that we're still kind of
(09:00):
in the works with and we're hopingto be able to select another individual,
hopefully after our fundraiser next weekend.Okay, cool, tell me about that
fundraiser, by the way, what'sthe plan here and what are you planning
on doing? Well? Amazingly,our first recipient was so overjoyed and I
and the theme of paying it forwardand giving back. They were so happy
(09:22):
that we gave them a bike thatthey are now throwing us a fundraiser.
This mom understands that we are busymoms as well, and we're trying our
hardest to work and raise our childrenand get this foundation up and running.
So she is playing a fundraiser ata sports club that she is a member
of and right now we are soldout and it's three hundred and fifty tickets
(09:46):
that we sold, so we arereally excited. And Alyssa, are you
working with any other community groups,any businesses, Is anybody chipping in to
help you out here? Not yetyet, being the special word, would
love additional involvement. Like Lindsay said, where we are both busy working and
trying to raise families, and itseems to be that the busiest people seem
(10:11):
to just take on more things.So we are finding ways to make it
happen, but we would love communitysupport. We would love to pair up
with an actual bike club, whetherthat's a motorcycle or a bicycle club,
and host some kind of bike runto raise money. I think it would
be really cool to see big bikesand adaptive bikes together on the street.
(10:37):
But we are open to suggestions andcollaborations and yeah, we just we just
want to get more bikes out thereand help kids have the same joys that
our boys have. Well, let'sgrow your little bike gang here the Rare
Riders. I love that. Ilove that name, by the way,
it's so cute, lindsay, howcan people if they want to donate,
if they want to connect, ifthey maybe they're a family with a special
(11:00):
needs child who's listening and thinking,oh my goodness, this would be so
helpful for me. How can peoplefind you on social media? We are
on Facebook, Instagram. It's aRare Riders bike fund and there's a link
to our landing page if you wantto donate or fill out an application.
(11:22):
It's all there, all right,phenomenal and last question, I guess for
you, ladies, let's I'll startwith you. What sort of advice would
you have for families who are lookingto help their child who might have special
needs get a little bit more outthere in the world and connect more with
their friends. What advice? Whathave you learned during your time as a
special needs parent? I would saythat it is easier when you know that
(11:48):
there are people in a similar boatas you. So Zain was actually born
healthy and three months in he lostall muscle tone. Still undiagnosed, he
has all kinds of medical complexities andwhen I met up with Lindsay. She
was like, Hey, we don'thave the same story, but we've got
(12:11):
enough similarities. Here's what I've done, And between what she's shared and what
we've come up with together, it'sfar less lonely navigating the specialtys parenting world.
So I can just say the bestthing is to find someone, whether
it's at school or early intervention ortherapies, and find a way to connect
(12:35):
and it just makes it better.And what about you, Lindsay, what
would your advice be. I'm actuallya special education teacher as well, so
I have been in the field forover twenty years, and I think my
philosophy is kind of it's not alwaysgoing to go right. It's not you
have a vision in your head ofwhat you want to do, and sometimes
(12:56):
it might work and that's great.But if it as and work out the
first time, just keep trying,and you know, stay with it.
Because sometimes our family out of outingsare fat and they're fun and they're amazing
and we're so happy we did it, and other times they're a disaster,
and you know, and even timeswhen we've been with Alissa and Mike,
(13:18):
Anner has screamed or theyin't has vomited, and you know, it's just it's
not perfect. It's a messy life, and honestly, you have to just
have humor and know that it's notalways going to be easy or as you
expect it, and just kind ofkeep your head up. I mean,
we get it. It's it's reallydifficult at times, but there are those
(13:41):
great moments where you see your sondo three rotations on a bike for the
first time, and it's those littletiny successes that you get that you want
to celebrate and hold on to.And honestly, comparison is the thief of
joy. Your child is your childand they're unique and you need to accept
your child as they are instead ofcomparing to others. Someone had told read
(14:05):
it in a book or back whenI used to have time to read.
It said something along the lines ofyou can't pick the hands that you're dealt,
but you have to play the bestout of your cards. And to
me that was an AHA moment oflike, yes, this is not what
I envisioned being a parent would be, but this is how my child is
(14:28):
and it's better to be happy thanto be sad all the time. So
we do adventures, and like Lindsaysaid, sometimes they're great. Sometimes they
are messy and involve lots of bodilywoods from Zane, but we figure it
out and we have a very lowbar for expectations. Well, it sounds
like you're taking the right approach.Absolutely, also very sarcastic. That's important.
(14:54):
Humor is definitely. I think that'swhat gets us through a lot of
things. I mean, and Alyssaand I we are the types of feeling
that we like to go out andwe do things. And just because we
have children with disabilities, I actuallyhave two children with disabilities, so it's
like I just am not going toget stuck in my house all the time
because that's just a miserable existence.So we you know, we are those
(15:15):
people where we go on vacations withall of our kids and we go to
the beach and we go camping,and we do all of these things because
we live our life as you know, best as we can. You have
to you absolutely do, ladies.This has been such a great conversation.
All the best of luck is youtry to raise money for another few bikes.
Thank you so much. Have asafe and healthy weekend. Please join
(15:37):
me again. Next week for anotheredition of the show, I'm Nicole Davis
from WBZ News Radio on iHeartRadio
From WBZ News Radio in Boston.This is New England Weekend. Each week
we come together, we talk aboutall the topics important to you and the
place where you live. Great tobe back with you. Of course,
as always, I'm Nicole Davis.For children who have special needs, access
to adaptive toys can really be agame changer. It's not just about play,
although of course that's important. It'sabout inclusion, independence, and you
(00:31):
know, just being a kid likeany other child. Two mothers on the
South Coast have been united by theshared experience of raising kids who have special
needs, and now together they're makingit their mission to make sure children all
over southeastern mass are not being heldback from the joy of being on a
bike just because of their physical abilities. Alyssa Desusa and Lindsay Best green Span
are here. We're going to talkabout rare Riders their mission. Ladies,
(00:54):
thank you so much for your timeon the show. Alyssa, we will
start with you here. Tell usa little bit about your story. I
guess we'll go with that first,and how you met up with Lindsay to
make this happen. Back in twentytwenty, my son was a student at
the Short School in Dartmouth, andhis physical therapist had sent home a picture
(01:15):
of him riding an adaptive bike atschool and she said how much he loved
it and how it was really greatas a physical therapy device, but that
insurance doesn't cover it, so welooked into purchasing it out of pocket and
we were shocked to find out thatit costs almost five thousand dollars, which
is incredible. Yeah, not quitelike running to Walmart and picking up a
(01:40):
bike off the shelf that you wouldwith a typical kid. So I jokingly
posted the picture on Facebook and Isaid, here's to hoping Santa can find
five thousand dollars before Christmas. Haha ha, And a friend of mine
said, well, maybe Santa isyour friends and family. We're gonna money
(02:00):
and try and get Zaye a bike. And before the end of the day,
they had created a GoFundMe that coveredthe costs of the bike plus some
and we were just amazed at that, and we knew that Lindsay's son,
Tanner, who also was in schoolwith Zane, would also benefit from a
bike. And we said, hey, if we have this extra money,
(02:23):
do you mind if we put ittowards the bike for Tanner, and our
friends and family were like, yep, here we go, and they raised
enough for Tanner to get a bikeas well before the end of the next
day. So in twenty four hoursthey had they had raised the funds for
us to purchase two adaptive bicycles forour boys. So Lindsay and I cried
(02:43):
a lot. Sure there might havebeen some ugly line. Yeah, ugly
crying. We were so so happyfor our kids and just overwhelmed that our
friends and family wanted to do somethingso wonderful for our kids. So we
said that we were going to payit forward, and we were trying to
(03:05):
think of how to do that,and Lindsay and I came up with the
idea that we would create a bikergang of kids with special needs who need
these adaptive bikes, whose families can'tfigure out a way to make that a
thing. And we decided to callthem the Rare Riders in honor of their
rare genetic disorders. I love that, and honestly, what a way to
(03:30):
turn it around. And first andfirst and foremost here your friends and family
are incredible, and you know,congratulations to you all for surrounding yourselves with
like such good people. I mean, that's phenomenal. But Lindsay, let's
kind of get into a little bitof the nitty gritty about these bikes.
Why do these bikes cost so much? Like? What is an adaptive bike
for people who might not be familiar. So, an adaptive bike is essentially
(03:53):
like a tricycle if you look atit. By looking at the bike,
it doesn't really look that complicated.But then when you look a little bit
closer, you see that the pedalshave straps, and then kids like Zane
need more support, so there're strapsand the seats that help him sit upright.
The seats are also not just likeregular bike seats which are super tiny.
(04:15):
They are almost like chairs where theyhave a larger bottom and a larger
supportive back to help keep the kidssitting up right. Each kid has a
different level of need, so thebikes are also modified for each child's need.
Even with the difference between Zane andTanner, Zane needs a little bit
more physical support to help him,so his bike was actually more expensive,
(04:39):
where Tanner is a little bit moremobile so he doesn't need as much support.
And the other great thing about thisbike is that the children start to
learn that motor movement memory by havingtheir feet strapped into the pedals and the
pedals move as we can propel thebike, but the kids can also propel
the bike themselves, and we canhelp them stee the bike. So it's
(05:00):
those foundational skills that other children haveand are able to access, but our
children can't. And typically, wheneveryou put a special adaptive equipment label on
anything, the price quadruples a regularprice of something. So it's really it
becomes difficult as a special needs parentwhen you're buying all this extra equipment for
(05:21):
your child. It's extremely expensive.Oh sure, and frankly, you know
it's got to take a toll onthe family budget, but it's also got
to take a toll on mental healthand emotional health because you just want your
kid to have the same experiences asall the other kids, right, and
being able to get out there andbe on the bike and just feel the
wind in your hair and have thatsense of independence. Alyssa, talk to
(05:44):
us about how your children have growninto these bikes and what the bikes have
been able to do for them.So when Zane first got his bike,
he could barely self propel it wasmajority of the time of standing behind him
giving him gentle nudges. Our drivewayhas a slight incline, so that made
it a little bit easier. Andnow two years later, he is able
(06:06):
to pedal his bike around school threefour laps at a time without much assistance.
Sometimes he drives it to a wall. But my older son does that
too, so I don't know ifthat's just a kid. I think that's
like part of life. Yeah,oh man, what about Tanner? How's
(06:28):
he doing on his bike? Tanner'sdoing really well. So when he first
got his bike, he was ableto make a few rotations of the pedals
independently, and now he is definitelyable to propel himself around the driveway and
down the street. And what italso allows him to do is engage in
a recreation activity with his others.So before it was usually just kind of
(06:50):
him watching his brothers from the windowor sitting in the driveway and watching his
brothers ride their bikes. But nowhe can ride around with them, and
that is basically one of the biggestreasons for why we want these bikes for
the boys is that they can dothings with their siblings and their friends.
And their family and be one ofthem and feel like they're one of them.
(07:11):
It's a very expensive, normal scenethat you wouldn't expect that it would
cost that much for our kids todo something together. But I can't recommend
it enough. Finding something that yourkids can do together that as a specialty's
family, we didn't think was possible. Yeah, and there's plenty of other
families out there who are in thesame boat, and with rare riders,
(07:31):
hopefully you can reach many of them. And how are you trying to do
that at this point? What areyou doing for community outreach? Our secret
project has been to donate a biketo the community to use on the fair
Haven Bike Trail and the surrounded andpaved areas. We realized that these bikes
(07:54):
are large, they do not foldeasily, they are difficult to store or
especially if you don't have a shedin your backyard or if you live in
an apartment, it's not something thatyou could carry upstairs. So we decided
that having a bike in the communityfor hundreds of people to have access to
(08:16):
would be the best way to sharethe love. Really, so we're working
closely with the fair Haven Commission onDisability on the logistics of it, and
we're hoping to get that ball rollingvery soon. Beautiful, And obviously there's
plenty of people on the South Coastwho might be in the same situation.
So lindsay, what are you doingwhen it comes to further outreach? Are
(08:37):
you looking to move outside of fairHaven? I know you're from Dartmouth and
East Freetown respectively. What are youplanning on doing for the future. So
our plan is to donate at leastone bike to a child within the South
Coast every single year. This yearwe were able to give a bike to
our first recipient, and we havean application process that we're still kind of
(09:00):
in the works with and we're hopingto be able to select another individual,
hopefully after our fundraiser next weekend.Okay, cool, tell me about that
fundraiser, by the way, what'sthe plan here and what are you planning
on doing? Well? Amazingly,our first recipient was so overjoyed and I
and the theme of paying it forwardand giving back. They were so happy
(09:22):
that we gave them a bike thatthey are now throwing us a fundraiser.
This mom understands that we are busymoms as well, and we're trying our
hardest to work and raise our childrenand get this foundation up and running.
So she is playing a fundraiser ata sports club that she is a member
of and right now we are soldout and it's three hundred and fifty tickets
(09:46):
that we sold, so we arereally excited. And Alyssa, are you
working with any other community groups,any businesses, Is anybody chipping in to
help you out here? Not yetyet, being the special word, would
love additional involvement. Like Lindsay said, where we are both busy working and
trying to raise families, and itseems to be that the busiest people seem
(10:11):
to just take on more things.So we are finding ways to make it
happen, but we would love communitysupport. We would love to pair up
with an actual bike club, whetherthat's a motorcycle or a bicycle club,
and host some kind of bike runto raise money. I think it would
be really cool to see big bikesand adaptive bikes together on the street.
(10:37):
But we are open to suggestions andcollaborations and yeah, we just we just
want to get more bikes out thereand help kids have the same joys that
our boys have. Well, let'sgrow your little bike gang here the Rare
Riders. I love that. Ilove that name, by the way,
it's so cute, lindsay, howcan people if they want to donate,
if they want to connect, ifthey maybe they're a family with a special
(11:00):
needs child who's listening and thinking,oh my goodness, this would be so
helpful for me. How can peoplefind you on social media? We are
on Facebook, Instagram. It's aRare Riders bike fund and there's a link
to our landing page if you wantto donate or fill out an application.
(11:22):
It's all there, all right,phenomenal and last question, I guess for
you, ladies, let's I'll startwith you. What sort of advice would
you have for families who are lookingto help their child who might have special
needs get a little bit more outthere in the world and connect more with
their friends. What advice? Whathave you learned during your time as a
special needs parent? I would saythat it is easier when you know that
(11:48):
there are people in a similar boatas you. So Zain was actually born
healthy and three months in he lostall muscle tone. Still undiagnosed, he
has all kinds of medical complexities andwhen I met up with Lindsay. She
was like, Hey, we don'thave the same story, but we've got
(12:11):
enough similarities. Here's what I've done, And between what she's shared and what
we've come up with together, it'sfar less lonely navigating the specialtys parenting world.
So I can just say the bestthing is to find someone, whether
it's at school or early intervention ortherapies, and find a way to connect
(12:35):
and it just makes it better.And what about you, Lindsay, what
would your advice be. I'm actuallya special education teacher as well, so
I have been in the field forover twenty years, and I think my
philosophy is kind of it's not alwaysgoing to go right. It's not you
have a vision in your head ofwhat you want to do, and sometimes
(12:56):
it might work and that's great.But if it as and work out the
first time, just keep trying,and you know, stay with it.
Because sometimes our family out of outingsare fat and they're fun and they're amazing
and we're so happy we did it, and other times they're a disaster,
and you know, and even timeswhen we've been with Alissa and Mike,
(13:18):
Anner has screamed or theyin't has vomited, and you know, it's just it's
not perfect. It's a messy life, and honestly, you have to just
have humor and know that it's notalways going to be easy or as you
expect it, and just kind ofkeep your head up. I mean,
we get it. It's it's reallydifficult at times, but there are those
(13:41):
great moments where you see your sondo three rotations on a bike for the
first time, and it's those littletiny successes that you get that you want
to celebrate and hold on to.And honestly, comparison is the thief of
joy. Your child is your childand they're unique and you need to accept
your child as they are instead ofcomparing to others. Someone had told read
(14:05):
it in a book or back whenI used to have time to read.
It said something along the lines ofyou can't pick the hands that you're dealt,
but you have to play the bestout of your cards. And to
me that was an AHA moment oflike, yes, this is not what
I envisioned being a parent would be, but this is how my child is
(14:28):
and it's better to be happy thanto be sad all the time. So
we do adventures, and like Lindsaysaid, sometimes they're great. Sometimes they
are messy and involve lots of bodilywoods from Zane, but we figure it
out and we have a very lowbar for expectations. Well, it sounds
like you're taking the right approach.Absolutely, also very sarcastic. That's important.
(14:54):
Humor is definitely. I think that'swhat gets us through a lot of
things. I mean, and Alyssaand I we are the types of feeling
that we like to go out andwe do things. And just because we
have children with disabilities, I actuallyhave two children with disabilities, so it's
like I just am not going toget stuck in my house all the time
because that's just a miserable existence.So we you know, we are those
(15:15):
people where we go on vacations withall of our kids and we go to
the beach and we go camping,and we do all of these things because
we live our life as you know, best as we can. You have
to you absolutely do, ladies.This has been such a great conversation.
All the best of luck is youtry to raise money for another few bikes.
Thank you so much. Have asafe and healthy weekend. Please join
(15:37):
me again. Next week for anotheredition of the show, I'm Nicole Davis
from WBZ News Radio on iHeartRadio
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