June 12, 2023 • 14 mins
Aired June 11, 2023: Lisa Foxx interviewed Amanda Stevens with The axeALS Foundation. Amanda shared her story and how she and her husband and supporters are doing EVERYTHING they can to extend his life and the life of others living with the deadly ALS disease. EVERY DOLLAR COUNTS. Please give what you can and support these wonderful people, doing the best they can to beat the clock.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hi, It's Lisa Fox and thisis the iHeart SOCl Show. So tomorrow
there's a big charity golf tournament happeningat the Newport Beach Country Club. It's
the athletes first invitational golf tournament withprofessional athletes, celebrities and friends all coming
together to benefit the Acts ALS Foundation. It was founded by Eric and Amanda
Stevens after Eric was diagnosed with ALSat just twenty nine years old. It's
(00:26):
a fatal disease and the mission ofthe foundation is to raise awareness and funding
for LS treatments and clinical trials tohelp ALS patients and their families live as
full and normal lives as possible whilethey're still here. And of course you
encourage the research for the prevention,care and treatment and hopefully one day a
(00:48):
cure of ALS. And so happyto have on Amanda Stevens to tell us
more. Amanda, thank you formaking time for this. Thank you so
much for having me. Oh,such a tough disease to deal with,
especially with the life expectancy for thosewho are diagnosed with ALS is so short.
And obviously I want to talk aboutthe strides you all have made since
(01:10):
starting the foundation, getting donations gettingpeople to fuel change and help those with
ALS as best you can. Thewebsite is AXLS dot org. It's axe
als dot org axls dot org.But a man, I want to start
with your story. You and Eric, right, You your college sweethearts.
(01:30):
You're going to school to be ateacher. He's doing football, then he
plays professional football, then he becomesa firefighter. You're a teacher, You're
living the dream. You get married, you got a baby on the way,
and then out of nowhere, amonth later, he's diagnosed with ALS.
Yeah. My husband, Eric andI met in college. We both
(01:51):
went to UC Berkeley. We wereboth collegiate athletes there. It was kind
of like a love at first sightmoment. We just met through mutual friends.
Eric played in the NFL for alittle bit with the Saint Louis Rams
while I was pursuing my teaching credential, and then after football, he became
an LA City firefighter. He kindof followed in his older brother's footsteps.
(02:14):
And I became a second grade teacher. And we were living down in Orange
County with our chocolate lab Duke andjust had these like dream careers that we
both had worked so so hard forand then we got married in July of
twenty nineteen, and one month later, August twenty nineteen, my husband was
(02:37):
diagnosed with ALS at the age oftwenty nine. So yeah, I mean,
like you said, we kind ofbuilt this perfect life together and then
it all came crashing down. Andhow did the symptoms start? I mean,
as an athletic guy, I mean, does it starlight, thinking,
Oh, there must be a soremuscle, or must have worked out too
hard, or maybe the heat isgetting to me. How did it feel
(03:00):
for him physically to know something wasgoing on? Yeah, exactly. We
thought it was maybe an old footballinjury, a pinch nerve, you know,
anything, but but this di theseit started with weakness in his left
hand, and then his speech wasslowing down a little bit, and his
body just felt really, really tired. And then he started getting these twitching
(03:23):
in his arms or what they calledfesticulations. And when we went on to
Google and kind of put all ofthat in, ALS kept popping up and
he kind of had this gut feelingthat this that that could be what it
was, and so we skipped theprimary doctor. We just went straight to
the neurologists, and unfortunately, youknow that's what they ended up diagnosing him
(03:46):
with. Oh my gosh. Andthen you know, obviously when you start
reading the facts about ALS, andit's not as common as so many others
are, right, isn't like thirtythousand, Only about thirty thousand people in
our country have it? Yeah,they say about like every ninety minute someone's
diagnosed with the disease, in everyninety minutes someone passes away. So it's
(04:08):
a really quick turnover rate. Imean, you're given a two to five
year life expectancy. It's one hundredpercent fatal. And so they do say
it's rare, but I think patientsjust lose their voice so quickly and their
body breaks down so quickly that theylose that site as well. And so,
um, you know, we're tryingto kind of spread the word that
(04:30):
this isn't as rare as you think. You know, we all we thought,
you know, this is never goingto happen to us, But here
we are, and so we're justtrying to spread that message. It's uncommon,
but I wouldn't say it's rare anymore. I had a friend, my
dear friend, Chris Chup, wholost his battle a few years ago,
to als and him and his girlfriendgot married while he was sick because they
knew what was coming, and hereit comes. I was gonna forewarn you
(04:54):
that I'm a crier, but Ican imagine you've had those those tough days.
U do you get through it?I know we always instead of saying
like we have good days of baddays, we say we have good moments
and bad moments, because just ashe said, I don't think there's one
day where we get through it withoutcrying. Where is't like, you know,
(05:15):
this hits that this is our realityand this is kind of our new
normal and we have to kind oflearn how to how to keep going with
all of the just the horrible effectsof this disease has had on my husband,
and it really impacts the whole family, our extended family, our friends,
and yeah, it's extremely hard justseeing what this disease has done to
(05:35):
Eric. We're approaching four years nowand almost everything he relies on me now,
So he's lost all of his independenceat thirty three years old, which
is, you know, extremely,extremely devastating. But we try to just
focus on the positive, focus onthe things he still can do like talk
(05:59):
and sing and play with our daughterand enjoyed outdoors together. I mean,
we try to get out as muchas we can, although that's getting to
be a lot harder, challenging,challenging, yeah, yeah, everything.
My friend who lost his battle toALS a few years ago, he says
he was frustrated at the lack ofclinical trials and any kind of progressive treatments
out here for anyone with ALS.He did end up moving back east to
(06:23):
be closer with family and his futurewife so they can all help take care
of him as well, but hesaid he was frustrated at the time with
what you know wasn't available to helpALS patients here in southern California. What
has been your experience for your husband, Eric, Yeah, so, when
right after my husband was diagnosed,he was actually part of a clinical trial.
(06:45):
It was a drug called our Own, and we do feel it really
helped him. I mean, likeI said, we're approaching four years and
he's still walking a little bit,he's still speaking very clearly, eating normally
for the most part, and soI think my husband's living proof that experimental
therapies can really help extend the livesof ALS patients. And when we created
(07:06):
the Axles Foundation. That was oneof our biggest goals was how can we
allow more patients to have that sameopportunity that Eric had. Obviously, clinical
trials are only dedicated to a smallpercentage of ALS patients, and once you
reach three and four years into thediagnosis, you no longer qualify for those
(07:30):
clinical trials anymore. And so oneof the biggest missions of the Axalis Foundation
is to provide expanded access programs toALS patients, which would mean that they
can try these drugs, there's noplacebo, and they still get a chance
that fighting for their life. Andso with the money that we've raised so
far in the foundation, we justgave a gift of four hundred eighty six
(07:54):
thousand dollars to mass General and UCIrvine and this will allow thirty patients over
three years to access treatments that arestuck in clinical trials. And that's obviously
that's huge, and I bet thosefamilies, those patients are just, oh,
like, what a gift, Whata gift from God that you were
(08:16):
able to pull this off. Yeah, I know, we're so so grateful,
and this wouldn't have happened without allof the donations that we've received.
Were extremely extremely grateful for those Butlike you said, with the event tomorrow,
we hope to expand this more.You know, thirty patients isn't that
many, So how can we openthis up to more patients? And just
I know I can speak for Ericand other patients. They just want a
(08:39):
chance at fighting this disease, andwe know that they need to access these
drugs. Sure. Sure, andagain with the support that y'all have had,
mentioned your Instagram handles because I know, I mean, you guys have
a gazillion people following you on Instagramand social media because you know, you
post a lot of inspirational videos andinformative videos and just come day to day
(09:00):
the day in the life of whatyou guys are experiencing as a family with
your husband being diagnosed and living,you know, as long as you possibly
can with the stabilitating LS disease.But mentioned that Instagram handles so that folks
can follow and join this massive supportsystem for you guys as a family and
for those living with als. Ourinstagram is Team Stevens Nation. So we
(09:24):
kind of made the shift from youknow, all the supports that Eric received
and we're making that transition over toaks als where we can now go on
to help other families in need aswell. But our Instagram is Team Stevens
Nation, our Twitter is Stevens Nation, and spacebook is also Team Stevens Nation.
(09:45):
But also our website is als dotorg. So many ways to stay
in touch and follow Eric and AmandaStevens and their mission to help those with
als like your husband. Folks comingtogether to help you. Do events throughout
the year, big fundraisers throughout theyear. I know Eric's firefighter friends have
done some biggies. And then tomorrowthe Athletes' first invitational celebrity golf tournament taking
(10:07):
place in Newport Beach Country Club,another chance to get a ticket and help
them raise some money. I know, we're so so excited for tomorrow.
So we're partnering with Athletes First,which is an NFL agency, and so
the tournament tomorrow, the golfing teamswill be paired with president and former NFL
players. Just some names are justinHerbert Derwin, James cam Akers, Alex
(10:33):
Mack who's a cow guy, playedwith Eric, and many others. And
we're just so fortunate for Athletes Firstto benefit our organization, and we're really
really looking forward to an amazing event. There probably still are some dinner tickets
available if people are interested in Yeah, if they hear this and they're interested
in coming, It's at Newport BeachCountry Club. I think the cocktail hour
(10:54):
starts at four pm and you canpurchase dinner tickets on our website. There
you go Newport Beach Country Club tomorrow. If you can join in person.
Dinner tickets available acts als dot org, axe als dot org or of course,
donations are always welcome. And again, remember what you're doing for people
(11:16):
who who are suffering with ALS,such a rapidly progressing disease with no cure
and such a short life expectancy oncediagnosed. Oh it's a lot, and
you know you've got to be astrong person to take all this on.
But what do they say? Youknow, God never gives you more than
you can handle, So God blessyou are doing your best to stay strong
(11:37):
every day for your husband, foryour family, and for other families also
living with ALS. Yeah, Imean, I think, like you said,
it's just kind of changed our wholeperspective on life. You know,
my husband wakes up with a smileon his face and just tries to live
each day to his fullest, andI don't think many people can say the
(11:58):
same, because we just take thisprecious life for granted. But yeah,
I just want to say thank youfor having us on any chance that we
get to continue to spread awareness forthis disease. I think it's so so
needed. Research and treatment are soneeded for this disease, and obviously that's
very expensive. A lot of familiesalso go bankrupt with this disease because of
(12:22):
how expensive it is for the careand all of the equipments that you need,
And so any donation helps for ourfoundation. Obviously I talked about we
want to give to allow patients accessto treatment, but also helping other families,
other young families who are going throughthis like we are. It's just
extremely devastating seeing the person you lovejust deteriorate right in front of your eyes
(12:45):
and feeling so helpless. Sure,so yeah, any donation means the world
to us. And again, thisis to fight ALS. Also known as
Luke Garret's disease. It's a neurologicaldisease involving the neural which control voluntary muscle
movement, like things that we doevery day without thinking right, chewing,
(13:05):
walking, talking, breathing, andthen as ALS progresses, the neurons in
the brain and spinal cord degenerate anddie, so then the brain can no
longer control the voluntary movement. Youlose control. And in most cases,
ALS is such a rapidly progressing diseasemost people once diagnosed when they first start
(13:26):
experiencing symptoms. Most people diagnose withthis with ALS live for only two to
five years. The exact cause ofALS is unknown and there currently is no
cure, but Eric and Amanda Stevensare trying to change that with their organization
acts ALS. And you being sucha champion for your husband and for your
(13:46):
family. God bless your strength andthank you for doing all that you do
every single day and for other patientsand families living with ALS. Donate what
you can find out more and ofcourse a dinner. Tickets still available for
tomorrow night for the big charity golftournament Newport Beach Country Club. All the
info on Eric and Amanda Stevens organizationAXALS dot org, as ALS dot org.
(14:09):
Amanda, thank you so much andplease send our love to Eric.
Okay, thank you so much.Lisa
Hi, It's Lisa Fox and thisis the iHeart SOCl Show. So tomorrow
there's a big charity golf tournament happeningat the Newport Beach Country Club. It's
the athletes first invitational golf tournament withprofessional athletes, celebrities and friends all coming
together to benefit the Acts ALS Foundation. It was founded by Eric and Amanda
Stevens after Eric was diagnosed with ALSat just twenty nine years old. It's
(00:26):
a fatal disease and the mission ofthe foundation is to raise awareness and funding
for LS treatments and clinical trials tohelp ALS patients and their families live as
full and normal lives as possible whilethey're still here. And of course you
encourage the research for the prevention,care and treatment and hopefully one day a
(00:48):
cure of ALS. And so happyto have on Amanda Stevens to tell us
more. Amanda, thank you formaking time for this. Thank you so
much for having me. Oh,such a tough disease to deal with,
especially with the life expectancy for thosewho are diagnosed with ALS is so short.
And obviously I want to talk aboutthe strides you all have made since
(01:10):
starting the foundation, getting donations gettingpeople to fuel change and help those with
ALS as best you can. Thewebsite is AXLS dot org. It's axe
als dot org axls dot org.But a man, I want to start
with your story. You and Eric, right, You your college sweethearts.
(01:30):
You're going to school to be ateacher. He's doing football, then he
plays professional football, then he becomesa firefighter. You're a teacher, You're
living the dream. You get married, you got a baby on the way,
and then out of nowhere, amonth later, he's diagnosed with ALS.
Yeah. My husband, Eric andI met in college. We both
(01:51):
went to UC Berkeley. We wereboth collegiate athletes there. It was kind
of like a love at first sightmoment. We just met through mutual friends.
Eric played in the NFL for alittle bit with the Saint Louis Rams
while I was pursuing my teaching credential, and then after football, he became
an LA City firefighter. He kindof followed in his older brother's footsteps.
(02:14):
And I became a second grade teacher. And we were living down in Orange
County with our chocolate lab Duke andjust had these like dream careers that we
both had worked so so hard forand then we got married in July of
twenty nineteen, and one month later, August twenty nineteen, my husband was
(02:37):
diagnosed with ALS at the age oftwenty nine. So yeah, I mean,
like you said, we kind ofbuilt this perfect life together and then
it all came crashing down. Andhow did the symptoms start? I mean,
as an athletic guy, I mean, does it starlight, thinking,
Oh, there must be a soremuscle, or must have worked out too
hard, or maybe the heat isgetting to me. How did it feel
(03:00):
for him physically to know something wasgoing on? Yeah, exactly. We
thought it was maybe an old footballinjury, a pinch nerve, you know,
anything, but but this di theseit started with weakness in his left
hand, and then his speech wasslowing down a little bit, and his
body just felt really, really tired. And then he started getting these twitching
(03:23):
in his arms or what they calledfesticulations. And when we went on to
Google and kind of put all ofthat in, ALS kept popping up and
he kind of had this gut feelingthat this that that could be what it
was, and so we skipped theprimary doctor. We just went straight to
the neurologists, and unfortunately, youknow that's what they ended up diagnosing him
(03:46):
with. Oh my gosh. Andthen you know, obviously when you start
reading the facts about ALS, andit's not as common as so many others
are, right, isn't like thirtythousand, Only about thirty thousand people in
our country have it? Yeah,they say about like every ninety minute someone's
diagnosed with the disease, in everyninety minutes someone passes away. So it's
(04:08):
a really quick turnover rate. Imean, you're given a two to five
year life expectancy. It's one hundredpercent fatal. And so they do say
it's rare, but I think patientsjust lose their voice so quickly and their
body breaks down so quickly that theylose that site as well. And so,
um, you know, we're tryingto kind of spread the word that
(04:30):
this isn't as rare as you think. You know, we all we thought,
you know, this is never goingto happen to us, But here
we are, and so we're justtrying to spread that message. It's uncommon,
but I wouldn't say it's rare anymore. I had a friend, my
dear friend, Chris Chup, wholost his battle a few years ago,
to als and him and his girlfriendgot married while he was sick because they
knew what was coming, and hereit comes. I was gonna forewarn you
(04:54):
that I'm a crier, but Ican imagine you've had those those tough days.
U do you get through it?I know we always instead of saying
like we have good days of baddays, we say we have good moments
and bad moments, because just ashe said, I don't think there's one
day where we get through it withoutcrying. Where is't like, you know,
(05:15):
this hits that this is our realityand this is kind of our new
normal and we have to kind oflearn how to how to keep going with
all of the just the horrible effectsof this disease has had on my husband,
and it really impacts the whole family, our extended family, our friends,
and yeah, it's extremely hard justseeing what this disease has done to
(05:35):
Eric. We're approaching four years nowand almost everything he relies on me now,
So he's lost all of his independenceat thirty three years old, which
is, you know, extremely,extremely devastating. But we try to just
focus on the positive, focus onthe things he still can do like talk
(05:59):
and sing and play with our daughterand enjoyed outdoors together. I mean,
we try to get out as muchas we can, although that's getting to
be a lot harder, challenging,challenging, yeah, yeah, everything.
My friend who lost his battle toALS a few years ago, he says
he was frustrated at the lack ofclinical trials and any kind of progressive treatments
out here for anyone with ALS.He did end up moving back east to
(06:23):
be closer with family and his futurewife so they can all help take care
of him as well, but hesaid he was frustrated at the time with
what you know wasn't available to helpALS patients here in southern California. What
has been your experience for your husband, Eric, Yeah, so, when
right after my husband was diagnosed,he was actually part of a clinical trial.
(06:45):
It was a drug called our Own, and we do feel it really
helped him. I mean, likeI said, we're approaching four years and
he's still walking a little bit,he's still speaking very clearly, eating normally
for the most part, and soI think my husband's living proof that experimental
therapies can really help extend the livesof ALS patients. And when we created
(07:06):
the Axles Foundation. That was oneof our biggest goals was how can we
allow more patients to have that sameopportunity that Eric had. Obviously, clinical
trials are only dedicated to a smallpercentage of ALS patients, and once you
reach three and four years into thediagnosis, you no longer qualify for those
(07:30):
clinical trials anymore. And so oneof the biggest missions of the Axalis Foundation
is to provide expanded access programs toALS patients, which would mean that they
can try these drugs, there's noplacebo, and they still get a chance
that fighting for their life. Andso with the money that we've raised so
far in the foundation, we justgave a gift of four hundred eighty six
(07:54):
thousand dollars to mass General and UCIrvine and this will allow thirty patients over
three years to access treatments that arestuck in clinical trials. And that's obviously
that's huge, and I bet thosefamilies, those patients are just, oh,
like, what a gift, Whata gift from God that you were
(08:16):
able to pull this off. Yeah, I know, we're so so grateful,
and this wouldn't have happened without allof the donations that we've received.
Were extremely extremely grateful for those Butlike you said, with the event tomorrow,
we hope to expand this more.You know, thirty patients isn't that
many, So how can we openthis up to more patients? And just
I know I can speak for Ericand other patients. They just want a
(08:39):
chance at fighting this disease, andwe know that they need to access these
drugs. Sure. Sure, andagain with the support that y'all have had,
mentioned your Instagram handles because I know, I mean, you guys have
a gazillion people following you on Instagramand social media because you know, you
post a lot of inspirational videos andinformative videos and just come day to day
(09:00):
the day in the life of whatyou guys are experiencing as a family with
your husband being diagnosed and living,you know, as long as you possibly
can with the stabilitating LS disease.But mentioned that Instagram handles so that folks
can follow and join this massive supportsystem for you guys as a family and
for those living with als. Ourinstagram is Team Stevens Nation. So we
(09:24):
kind of made the shift from youknow, all the supports that Eric received
and we're making that transition over toaks als where we can now go on
to help other families in need aswell. But our Instagram is Team Stevens
Nation, our Twitter is Stevens Nation, and spacebook is also Team Stevens Nation.
(09:45):
But also our website is als dotorg. So many ways to stay
in touch and follow Eric and AmandaStevens and their mission to help those with
als like your husband. Folks comingtogether to help you. Do events throughout
the year, big fundraisers throughout theyear. I know Eric's firefighter friends have
done some biggies. And then tomorrowthe Athletes' first invitational celebrity golf tournament taking
(10:07):
place in Newport Beach Country Club,another chance to get a ticket and help
them raise some money. I know, we're so so excited for tomorrow.
So we're partnering with Athletes First,which is an NFL agency, and so
the tournament tomorrow, the golfing teamswill be paired with president and former NFL
players. Just some names are justinHerbert Derwin, James cam Akers, Alex
(10:33):
Mack who's a cow guy, playedwith Eric, and many others. And
we're just so fortunate for Athletes Firstto benefit our organization, and we're really
really looking forward to an amazing event. There probably still are some dinner tickets
available if people are interested in Yeah, if they hear this and they're interested
in coming, It's at Newport BeachCountry Club. I think the cocktail hour
(10:54):
starts at four pm and you canpurchase dinner tickets on our website. There
you go Newport Beach Country Club tomorrow. If you can join in person.
Dinner tickets available acts als dot org, axe als dot org or of course,
donations are always welcome. And again, remember what you're doing for people
(11:16):
who who are suffering with ALS,such a rapidly progressing disease with no cure
and such a short life expectancy oncediagnosed. Oh it's a lot, and
you know you've got to be astrong person to take all this on.
But what do they say? Youknow, God never gives you more than
you can handle, So God blessyou are doing your best to stay strong
(11:37):
every day for your husband, foryour family, and for other families also
living with ALS. Yeah, Imean, I think, like you said,
it's just kind of changed our wholeperspective on life. You know,
my husband wakes up with a smileon his face and just tries to live
each day to his fullest, andI don't think many people can say the
(11:58):
same, because we just take thisprecious life for granted. But yeah,
I just want to say thank youfor having us on any chance that we
get to continue to spread awareness forthis disease. I think it's so so
needed. Research and treatment are soneeded for this disease, and obviously that's
very expensive. A lot of familiesalso go bankrupt with this disease because of
(12:22):
how expensive it is for the careand all of the equipments that you need,
And so any donation helps for ourfoundation. Obviously I talked about we
want to give to allow patients accessto treatment, but also helping other families,
other young families who are going throughthis like we are. It's just
extremely devastating seeing the person you lovejust deteriorate right in front of your eyes
(12:45):
and feeling so helpless. Sure,so yeah, any donation means the world
to us. And again, thisis to fight ALS. Also known as
Luke Garret's disease. It's a neurologicaldisease involving the neural which control voluntary muscle
movement, like things that we doevery day without thinking right, chewing,
(13:05):
walking, talking, breathing, andthen as ALS progresses, the neurons in
the brain and spinal cord degenerate anddie, so then the brain can no
longer control the voluntary movement. Youlose control. And in most cases,
ALS is such a rapidly progressing diseasemost people once diagnosed when they first start
(13:26):
experiencing symptoms. Most people diagnose withthis with ALS live for only two to
five years. The exact cause ofALS is unknown and there currently is no
cure, but Eric and Amanda Stevensare trying to change that with their organization
acts ALS. And you being sucha champion for your husband and for your
(13:46):
family. God bless your strength andthank you for doing all that you do
every single day and for other patientsand families living with ALS. Donate what
you can find out more and ofcourse a dinner. Tickets still available for
tomorrow night for the big charity golftournament Newport Beach Country Club. All the
info on Eric and Amanda Stevens organizationAXALS dot org, as ALS dot org.
(14:09):
Amanda, thank you so much andplease send our love to Eric.
Okay, thank you so much.Lisa
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