July 10, 2025 • 19 mins
"The gift of this disease is I know what's coming and I have the gift of leaving nothing undone and nothing unsaid." Powerful insights from ALS patients and how cutting-edge tech like brain-computer interfaces are transforming lives. Listen now. #ALSawareness
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Hello everybody and welcome to the Inner Harbor cast
.
My name is Skip Clark and I'myour host this morning.
We are your go-to spot for thestories and leaders building our
Syracuse community, and todaywe're honored to have a guest
whose impact reaches far beyondthe boardroom, so to speak.
Joining us is Liz Crisanda.
(00:23):
She is the regional vicepresident and a passionate
advocate for the ALS Association.
In addition to her impressivetrack record of driving regional
growth and innovation, lizdedicates her time to supporting
families and advancing researchin the fight against ALS, a
cause that touches countlesslives.
(00:45):
Liz, it's so good to see you,welcome, welcome back.
Speaker 2 (00:48):
Well, thank you very much for having me back.
I am glad to be here.
Speaker 1 (00:52):
You know, it's so good to see you and it's always
some great information Forlisteners unfamiliar with ALS,
how would you explain what it isin simple terms?
Speaker 2 (01:03):
Simple terms.
Speaker 1 (01:04):
Okay.
Speaker 2 (01:04):
So ALS stands for amyotrophic lateral sclerosis,
so try saying that three timesfast.
Will not, and what it actuallymeans is that the nerves
actually on the side of yourspinal cord lose nourishment and
they wither and die, and theseare the nerve endings that
transmit impulses from yourbrain to your voluntary motor
(01:25):
functions.
So that would mean, like yourfingers and toes, any movement
you have.
And then one of the things thatpeople don't think about is
breathing.
Breathing is actually avoluntary motor function, unlike
your digestive system or yourheart.
Speaker 1 (01:38):
I would say, because the way you just described it,
that it's pretty much it's aprogressive disease and it's
probably or possibly quicker insome individuals than it is
others.
Is that correct to say?
Speaker 2 (01:51):
That is correct, and so there are a couple kinds of
ALS.
There's one that's calledsporadic ALS, which is something
where there's not a geneticknown component.
There's also what we callbulbar ALS or limb onset, and so
someone who has bulbar onsetALS actually loses their ability
to swallow and speak.
(02:12):
First people who have limbonset ALS.
What happens is they startlosing the sensation and
movement in their fingers and intheir toes, and then it
actually works its way upwardinto their body until their
diaphragm is affected.
Speaker 1 (02:26):
Well, what are some of the early symptoms of ALS?
Speaker 2 (02:30):
So early symptoms, like I said, would be weakness
in your hands and your feet.
Oftentimes people with ALS aremisdiagnosed or don't see those
symptoms for what they are.
We've seen patients who've beenreferred to like orthopedic
surgeons for like a pinchednerve in their back or their
neck or for someone who is inmiddle age.
(02:50):
They'll say, well, it's becauseof my job, or it's like a like
an overuse.
I'm getting old and so I'mstarting to see that kind of
thing will get treatment forother things.
The treatment is not working.
They continue to progress andthen eventually we'll get a
referral to a neurologist whowill then diagnose ALS.
(03:10):
Als is a disease that you getdiagnosed by ruling everything
else out, but there's no singletest for this.
Right now there is no singletest.
There are a couple kinds of ALSthat we know are connected to a
specific gene and so if you canget a gene test for that and
you can identify that gene oncethe SOD1 gene, or there's what
(03:34):
we call a C9 ORF gene, those weknow.
But people who have a geneticform of ALS are often not
surprised because it is rifethrough their families and so
they'll have it in manygenerations.
Speaker 1 (03:43):
Is this still a mystery as to what causes it, or
do we have an idea of some ofthe causes now?
Speaker 2 (03:49):
We do so since the ice bucket challenge we have
identified over 40 genes that weknow are associated with ALS.
There are a couple of the onesI mentioned that we know can
cause ALS.
Doesn't mean it will, but itcan.
We've had an instance where wehad twins One twin developed ALS
, the other twin did not.
But what we're really lookingat now is a genetic
(04:15):
predisposition and then whatcould be an environmental
trigger, and we do have someideas of things we know are
associated, but we haven'tdefinitively linked them.
Speaker 1 (04:25):
Gotcha.
Let's talk a little bit aboutthe treatment in living with ALS
With no known cure.
What treatment options arecurrently available for ALS
patients?
Speaker 2 (04:35):
So there are a couple drugs that are on the market.
One is Riluzol, the other iswhat's known as Radacava that
came on the market, I think, in2017, which has been shown to
slow the progression of ALS, butwe don't know it's not the same
for everybody and how long thatwould be.
There is a new drug on themarket called Kelsadi, which is
(04:58):
for one of the specific genes Imentioned, and that drug has
been shown not only to delay ALS, but in some cases it's been
shown to restore function forALS.
There's another gene called theFUS gene, where there's a drug
in clinical trial that's alsoshowing the same thing that
function can be restored.
(05:19):
That's something that up untiltwo years ago, we didn't even
think was possible, so it'sreally opening a lot of doors?
Speaker 1 (05:26):
Yeah.
What types of supportive careis available?
Speaker 2 (05:30):
So one of the things that the ALS Association does is
we work with the families inhow to translate what their
medical teams are telling them.
How to make that happen in ahome.
One of the most importantthings we do is make sure that
people go to a multidisciplinaryclinic.
There are two certifiedtreatment centers of excellence
in Syracuse.
They're the only two in upstateNew York.
(05:52):
It's like one-stop shop wherethey see all the therapists they
need, whether it's a physicaltherapist, a nutritionist or
breathing pulmonologist, all ofthat.
So in terms of the treatment,it's making sure they're living
as well as possible so thatthey're getting the right kind
of support for nutrition.
Are they getting the right if?
(06:13):
When they need a rollator?
Do they need a walker?
Do they need home modifications?
Do they need one of thosecomplex power wheelchairs that
you see?
Will they need speechgenerating devices, like when
you think of Stephen Hawking andyou think about the chair and
you think about the computer,that kind of thing, and
insurance covers that.
However, there's a copay forthat, and so for some people the
(06:37):
copay is too expensive.
We have a lot of loaner devicesthat we use.
We also work with a lot ofvendors on ramping and
transportation, all of it.
How do you live with thisdisease?
Speaker 1 (06:47):
Exactly, exactly.
How do the caregivers and,let's say, some of the medical
teams, how do they manage?
You know the emotional andphysical toll that the patient
has.
It is hard.
Speaker 2 (07:05):
I won't say you know, in the clinic staff that I've
talked to even our staff it cantake a toll on you.
On the other hand, what I oftenhear from our staff is it's
really an honor, it's aprivilege to help people go
through this journey and thatwe're helping this journey be
less traumatic or as leasttraumatic as we can help make it
for them so that they can spendtheir time living not worrying
about an insurance denial, notworrying about when this piece
(07:27):
of equipment is going to bedelivered.
Is it going to be the rightpiece of equipment?
Speaker 1 (07:30):
You shouldn't have to worry about any of that.
Speaker 2 (07:31):
You shouldn't have to or even problem solving.
We recently had a case wheretheir goal was to get to their
daughter's wedding, and so whatare all the things that needed
to be in place to get into thiswedding?
It's the transportation.
It's ramping to get into thefacility.
Is there an accessible bathroom?
So our care service providersare like go to the venue, Figure
it out.
Help the family figure it out,because they can see around the
(07:53):
corners.
Speaker 1 (07:55):
They don't know where they are and you're watching
the progression of somebody too,and that's got to be just
emotionally draining on somebody, because we know it's coming
and they do not.
Speaker 2 (08:02):
So, how do we help prepare them for that without
traumatizing them Exactly?
Speaker 1 (08:08):
Well, just to be the best friend you just got to hang
out.
Speaker 2 (08:11):
It takes a special kind of person to do the work it
does.
Speaker 1 (08:16):
Let's talk a little bit about some of the facts and
all that.
How many people in the US arediagnosed with ALS each year?
An approximate figure, I knowit's in the thousands.
Speaker 2 (08:22):
It's in the thousands .
So about 6,000 new diagnosesare made every year and the
(08:46):
number of people living with ALSis starting to increase.
Because people are not dying asearly as they used to,
oftentimes because one, we'vegot some drugs, that slow
progression feeding tube.
People just say no, I'm notgoing to do that, it's easier to
do now.
So they're living longer andthey're living better.
Speaker 1 (08:58):
And how does that number compare to numbers with
other diseases?
Speaker 2 (09:03):
We're still a relatively rare disease.
But you know what.
We say that.
But then I talk to people andalmost everyone I talk to knows
someone who had ALS.
Speaker 1 (09:12):
Because I think we're being made more aware of ALS.
We hear it on the news, itdoesn't matter what we're
watching.
Speaker 2 (09:20):
Chances are you're going to hear about ALS more so
now than ever before More so nowthan ever, and one of the
things that we've learned at theALS Association is that some
neurologists can spend theirentire career and never see a
case of ALS or not know whatthey're seeing, and so we
created a Think ALS tool thatwe're working with clinics and
physicians and regular doctorsand orthopedics of.
If you've got this symptom andthis symptom added to this
(09:44):
symptom, you need to Think ALS,get them referred, because if
they can get referred early one,they're getting care early.
Also they're eligible for aclinical trial earlier, and so
that benefits everybody.
Speaker 1 (09:58):
You know, as we know, ALS does not discriminate, so
that makes you want yourawareness to be out there.
You want it to be better knownobviously so you know, it's been
found.
I'm reading some of my noteshere it's been found that
military veterans are twice aslikely to develop ALS.
Do we know why?
Speaker 2 (10:17):
Not yet.
Not yet it's helped us look atthe idea of environmental
trigger for a geneticpredisposition.
But ALS is actually one of afew presumptive disabilities,
which means that if a veteranwho has seen active duty
develops ALS, it's considered a100% service-connected
disability and they get all thebenefits that come along with
(10:40):
that, so that actually relievesa lot of their burden, their
financial burdens, et cetera.
The Department of Defense alsohas a specific research program
that's dedicated to looking fora cure for this, because if we
can figure out why veterans aregetting it, that'll help us
figure out why other people aregetting it as well.
Speaker 1 (10:57):
No, I love to talk baseball.
Speaker 2 (10:59):
Okay.
Speaker 1 (10:59):
All right, lou Gehrig , all right, all right.
And of course it's called LouGehrig's disease.
For those that may not know andI'm sure there's some that do
not who was Lou Gehrig Lou, somethat do not, who was Lou Gehrig
Lou.
Speaker 2 (11:17):
Gehrig was the pride of the Yankees.
I was waiting for that.
Producer Steve loves that too.
He was the pride of the Yankeesand so he was diagnosed with
ALS and he passed away in 1939.
And he was one of the fewathletes I think he was one of
the first athletes who was verypublic with his disease.
He made sure people knew he hadhis disease.
He didn't hide his disease andwas really committed to living
with it, which, again, it's LouGehrig's disease.
(11:38):
Now it's interesting in theUnited States ALS is known as
Lou Gehrig's disease or ALS.
In the rest of the world it'scalled motor neuron disease.
Really, I did not know that.
Speaker 1 (11:49):
I didn't know that until I started the ALS
Association.
Which, by the way, how longhave you been there?
Speaker 2 (11:57):
Almost 10 years.
Yeah, wow, almost 10 years.
I started as an executivedirector in the upstate New York
chapter and I've continued withthe association.
Speaker 1 (12:00):
Yeah, I love it.
I can see the smile on yourface.
Just it tells me how dedicatedit is and how passionate you are
.
Speaker 2 (12:09):
I came to this position because I actually had
a friend who had ALS and watchedhis progression with ALS and he
was one of the most courageouspeople that I had ever met and,
to be honest with you, this wasmy way of paying it forward.
He was a great friend to ourfamily and then, once I started
doing this work, everybody I metwas incredibly inspirational.
(12:30):
I hope, or wish, that I wouldhave the courage and the grace
to navigate the disease that Isee our families and our
caregivers do.
Speaker 1 (12:39):
Lou Gehrig, the luckiest man on earth.
Tell me a little bit about thatspeech.
Speaker 2 (12:46):
Well, it was one of the speeches that people were
surprised to hear him make,actually, because what he did
and it showed his outlook.
He said, yeah, this is ahorrible break, it's a bad break
I've been given, but then hetalked about all the blessings
that he had in his life.
And our families often do thatas well.
And I will never forget aperson with ALS that once said
(13:10):
to me the gift of this diseaseand kind of had a hard time
wrapping my head around that,his that statement, and he said
but the gift of this disease isI know what's coming and I have
the gift of leaving nothingundone and nothing unsaid.
And that guides my work,because what can we do to make
sure that happens?
Speaker 1 (13:30):
And you know to have the guts to get up there and do
that and talk about that and beopen about that.
And if you listen to it wordfor word for word, it just it's,
it's the real deal.
Speaker 2 (13:43):
It is.
It is oftentimes ballparks onLou Gehrig's day which is June
4th.
If they have a game, they'llplay that I love it.
Speaker 1 (13:50):
What current research or clinical trials give you
hope for the future ALStreatment?
Speaker 2 (13:57):
A lot of the genetic trials, what we call antisense
technology.
Antisense technology is whatpeople would think of as
designer DNA.
You see it in the cancer space,where you have a particular
gene and then you create atreatment that targets that
particular gene.
That's really exciting.
The other research we're seeingis assistive technology, which
helps people live better, andone of the things I think about.
(14:20):
There's a company in New Yorkstate called Synchron that's
doing computer brain interfacetraining.
People will think aboutNeuralink.
Elon Musk is doing Neuralink.
It's actually believe it or not.
It's like this teeny tiny stent, this big, that goes into a
vein in your head, in your brain, and what we're finding is
people can control their voicegenerating devices with it.
(14:43):
They can control theirwheelchairs with it.
We would love to be able to seethem control their environments
, like turn lights on and off,move around their facility.
It's great for them.
It gives them independence.
It also relieves theircaregiver of having to do
everything for them, and sothat's super exciting.
But I don't know how these12-year-olds at MIT can think of
(15:05):
this.
Speaker 1 (15:05):
So this is in the works right now.
Speaker 2 (15:07):
It's in the works.
Right now.
We actually have two patientsin New York State that have it.
Speaker 1 (15:12):
They have like a trial going on.
They have a trial.
Speaker 2 (15:14):
And it's Bluetooth technology.
There's nothing attached tothem, it's Bluetooth technology.
Speaker 1 (15:18):
I love that.
I love that.
How can listeners support ALS?
What can we do?
Speaker 2 (15:24):
So there are a couple of ways.
One is if you go to wwwalsorg,you can learn about ALS.
Everything that I've talkedabout is there.
It's also if you're in New YorkState.
It geolocates to New York Stateso you can see what we're doing
here.
If you have ALS or know someone, it talks about our clinics, it
tells you who to contact, talksabout the programs that we
offer.
(15:44):
We have two fundraising eventscoming up in.
Speaker 1 (15:47):
Central, new York.
Talk to me.
Speaker 2 (15:48):
We have the Syracuse CEO Soak, which is August 21st,
where we are bringing communityleaders who we are fundraising
for us into the Clinton Fountainwhere we soak them.
It's kind of our take on theIce Bucket Challenge.
Speaker 1 (16:03):
I hope my boss is listening.
Speaker 2 (16:04):
I hope so too.
Give me his number and I willcall him on the Ice Bucket
Challenge.
Speaker 1 (16:07):
I hope my boss is listening.
I hope so, to give me hisnumber and I will call him.
I will do that when we get offthe air.
Absolutely, that would be great.
Speaker 2 (16:11):
And then we also have the Syracuse Walk to Defeat ALS
, which is September 27th.
Yeah wow.
Speaker 1 (16:17):
So those are the two big ones right now.
That's what for the remainderof this year.
Yep, I love that.
What about if somebody wantedto volunteer?
Now you're talking about theseevents, but I would assume you
need individuals to help out.
Speaker 2 (16:29):
So there's one, you can go to the website and
there's a volunteer form thatyou can fill out.
Or, if you wanted to go on toour website and look for the
name of a gentleman namedNicholas Morsiglio he is our
development manager and hisphone number is there and call
him, email him, say I want tohelp, say I want to help, I want
to be in touch.
Absolutely, we need volunteersto help with all of our events.
Speaker 1 (16:52):
I love that.
What about a donation Taxdeductible?
Speaker 2 (16:54):
Tax deductible, ALSorg, and again, those gifts
are geolocated so if it comes toNew York it's allocated to be
invested here.
Speaker 1 (17:04):
I love this question.
If you could clear up onecommon myth or misunderstanding
about ALS, what would it be?
Speaker 2 (17:13):
Oh my gosh, that, although I would say the average
life expectancy for someonewith ALS is one to three years,
more than half of the peoplethat we work with live longer
than five years.
That's awesome and again, andwith new treatments, we're going
to extend it and again, we'regoing to keep fighting for the
(17:33):
cure.
Speaker 1 (17:34):
Yeah, Liz.
If there's one thing you wantpeople to remember most after
listening and viewing thispodcast, or listening to it on
air one of our four great radiostations, what would that be?
Speaker 2 (17:47):
I want people to remember that Syracuse is such a
great community that supportsthe community, and so please
continue to support us and otherorganizations, because families
are really counting on thesupport.
Als is such an isolatingdisease and it's important for
(18:08):
all of our families not to feelisolated.
Speaker 1 (18:10):
I love what you do.
Thank you so much.
I love what I do.
I can tell, Like I said a fewminutes ago, the smile on your
face, the passion and dedicationto help others ALS.
You know Liz Cassandra right,Did I say that?
Right you did.
She is the regional vicepresident, of course, for the
ALS Association right here incentral New York, and you've got
(18:30):
a big region to cover too, fromwhat I understand.
Speaker 2 (18:33):
New York, new Jersey and all of New.
Speaker 1 (18:34):
England.
Yeah, you put the miles on thecar, absolutely.
Speaker 2 (18:37):
Absolutely, but I live here in Syracuse.
Well there you go.
Speaker 1 (18:39):
Well, thank you for coming in and thank you for
explaining a lot about ALS thatmany of us did not know, and we
love you, my pleasure.
Speaker 2 (18:48):
Anytime, have me back and I'll see you in the
fountain.
Speaker 1 (18:53):
I'm going to give you my boss's phone number, but no,
I would love to be a part ofthat as well, we'll have to come
.
Yeah, we'll definitely do that.
All right, thanks for watching.
It is the Inner Harbor cast andit's all part of the Community
Connection, our and it's allpart of the community connection
Our four great radio stations.
Thank you.
Speaker 2 (19:07):
Thank you very much.
Speaker 1 (19:12):
Yep end stream and then that should be loaded.
I'll get this.
Hello everybody and welcome to the Inner Harbor cast
.
My name is Skip Clark and I'myour host this morning.
We are your go-to spot for thestories and leaders building our
Syracuse community, and todaywe're honored to have a guest
whose impact reaches far beyondthe boardroom, so to speak.
Joining us is Liz Crisanda.
(00:23):
She is the regional vicepresident and a passionate
advocate for the ALS Association.
In addition to her impressivetrack record of driving regional
growth and innovation, lizdedicates her time to supporting
families and advancing researchin the fight against ALS, a
cause that touches countlesslives.
(00:45):
Liz, it's so good to see you,welcome, welcome back.
Speaker 2 (00:48):
Well, thank you very much for having me back.
I am glad to be here.
Speaker 1 (00:52):
You know, it's so good to see you and it's always
some great information Forlisteners unfamiliar with ALS,
how would you explain what it isin simple terms?
Speaker 2 (01:03):
Simple terms.
Speaker 1 (01:04):
Okay.
Speaker 2 (01:04):
So ALS stands for amyotrophic lateral sclerosis,
so try saying that three timesfast.
Will not, and what it actuallymeans is that the nerves
actually on the side of yourspinal cord lose nourishment and
they wither and die, and theseare the nerve endings that
transmit impulses from yourbrain to your voluntary motor
(01:25):
functions.
So that would mean, like yourfingers and toes, any movement
you have.
And then one of the things thatpeople don't think about is
breathing.
Breathing is actually avoluntary motor function, unlike
your digestive system or yourheart.
Speaker 1 (01:38):
I would say, because the way you just described it,
that it's pretty much it's aprogressive disease and it's
probably or possibly quicker insome individuals than it is
others.
Is that correct to say?
Speaker 2 (01:51):
That is correct, and so there are a couple kinds of
ALS.
There's one that's calledsporadic ALS, which is something
where there's not a geneticknown component.
There's also what we callbulbar ALS or limb onset, and so
someone who has bulbar onsetALS actually loses their ability
to swallow and speak.
(02:12):
First people who have limbonset ALS.
What happens is they startlosing the sensation and
movement in their fingers and intheir toes, and then it
actually works its way upwardinto their body until their
diaphragm is affected.
Speaker 1 (02:26):
Well, what are some of the early symptoms of ALS?
Speaker 2 (02:30):
So early symptoms, like I said, would be weakness
in your hands and your feet.
Oftentimes people with ALS aremisdiagnosed or don't see those
symptoms for what they are.
We've seen patients who've beenreferred to like orthopedic
surgeons for like a pinchednerve in their back or their
neck or for someone who is inmiddle age.
(02:50):
They'll say, well, it's becauseof my job, or it's like a like
an overuse.
I'm getting old and so I'mstarting to see that kind of
thing will get treatment forother things.
The treatment is not working.
They continue to progress andthen eventually we'll get a
referral to a neurologist whowill then diagnose ALS.
(03:10):
Als is a disease that you getdiagnosed by ruling everything
else out, but there's no singletest for this.
Right now there is no singletest.
There are a couple kinds of ALSthat we know are connected to a
specific gene and so if you canget a gene test for that and
you can identify that gene oncethe SOD1 gene, or there's what
(03:34):
we call a C9 ORF gene, those weknow.
But people who have a geneticform of ALS are often not
surprised because it is rifethrough their families and so
they'll have it in manygenerations.
Speaker 1 (03:43):
Is this still a mystery as to what causes it, or
do we have an idea of some ofthe causes now?
Speaker 2 (03:49):
We do so since the ice bucket challenge we have
identified over 40 genes that weknow are associated with ALS.
There are a couple of the onesI mentioned that we know can
cause ALS.
Doesn't mean it will, but itcan.
We've had an instance where wehad twins One twin developed ALS
, the other twin did not.
But what we're really lookingat now is a genetic
(04:15):
predisposition and then whatcould be an environmental
trigger, and we do have someideas of things we know are
associated, but we haven'tdefinitively linked them.
Speaker 1 (04:25):
Gotcha.
Let's talk a little bit aboutthe treatment in living with ALS
With no known cure.
What treatment options arecurrently available for ALS
patients?
Speaker 2 (04:35):
So there are a couple drugs that are on the market.
One is Riluzol, the other iswhat's known as Radacava that
came on the market, I think, in2017, which has been shown to
slow the progression of ALS, butwe don't know it's not the same
for everybody and how long thatwould be.
There is a new drug on themarket called Kelsadi, which is
(04:58):
for one of the specific genes Imentioned, and that drug has
been shown not only to delay ALS, but in some cases it's been
shown to restore function forALS.
There's another gene called theFUS gene, where there's a drug
in clinical trial that's alsoshowing the same thing that
function can be restored.
(05:19):
That's something that up untiltwo years ago, we didn't even
think was possible, so it'sreally opening a lot of doors?
Speaker 1 (05:26):
Yeah.
What types of supportive careis available?
Speaker 2 (05:30):
So one of the things that the ALS Association does is
we work with the families inhow to translate what their
medical teams are telling them.
How to make that happen in ahome.
One of the most importantthings we do is make sure that
people go to a multidisciplinaryclinic.
There are two certifiedtreatment centers of excellence
in Syracuse.
They're the only two in upstateNew York.
(05:52):
It's like one-stop shop wherethey see all the therapists they
need, whether it's a physicaltherapist, a nutritionist or
breathing pulmonologist, all ofthat.
So in terms of the treatment,it's making sure they're living
as well as possible so thatthey're getting the right kind
of support for nutrition.
Are they getting the right if?
(06:13):
When they need a rollator?
Do they need a walker?
Do they need home modifications?
Do they need one of thosecomplex power wheelchairs that
you see?
Will they need speechgenerating devices, like when
you think of Stephen Hawking andyou think about the chair and
you think about the computer,that kind of thing, and
insurance covers that.
However, there's a copay forthat, and so for some people the
(06:37):
copay is too expensive.
We have a lot of loaner devicesthat we use.
We also work with a lot ofvendors on ramping and
transportation, all of it.
How do you live with thisdisease?
Speaker 1 (06:47):
Exactly, exactly.
How do the caregivers and,let's say, some of the medical
teams, how do they manage?
You know the emotional andphysical toll that the patient
has.
It is hard.
Speaker 2 (07:05):
I won't say you know, in the clinic staff that I've
talked to even our staff it cantake a toll on you.
On the other hand, what I oftenhear from our staff is it's
really an honor, it's aprivilege to help people go
through this journey and thatwe're helping this journey be
less traumatic or as leasttraumatic as we can help make it
for them so that they can spendtheir time living not worrying
about an insurance denial, notworrying about when this piece
(07:27):
of equipment is going to bedelivered.
Is it going to be the rightpiece of equipment?
Speaker 1 (07:30):
You shouldn't have to worry about any of that.
Speaker 2 (07:31):
You shouldn't have to or even problem solving.
We recently had a case wheretheir goal was to get to their
daughter's wedding, and so whatare all the things that needed
to be in place to get into thiswedding?
It's the transportation.
It's ramping to get into thefacility.
Is there an accessible bathroom?
So our care service providersare like go to the venue, Figure
it out.
Help the family figure it out,because they can see around the
(07:53):
corners.
Speaker 1 (07:55):
They don't know where they are and you're watching
the progression of somebody too,and that's got to be just
emotionally draining on somebody, because we know it's coming
and they do not.
Speaker 2 (08:02):
So, how do we help prepare them for that without
traumatizing them Exactly?
Speaker 1 (08:08):
Well, just to be the best friend you just got to hang
out.
Speaker 2 (08:11):
It takes a special kind of person to do the work it
does.
Speaker 1 (08:16):
Let's talk a little bit about some of the facts and
all that.
How many people in the US arediagnosed with ALS each year?
An approximate figure, I knowit's in the thousands.
Speaker 2 (08:22):
It's in the thousands .
So about 6,000 new diagnosesare made every year and the
(08:46):
number of people living with ALSis starting to increase.
Because people are not dying asearly as they used to,
oftentimes because one, we'vegot some drugs, that slow
progression feeding tube.
People just say no, I'm notgoing to do that, it's easier to
do now.
So they're living longer andthey're living better.
Speaker 1 (08:58):
And how does that number compare to numbers with
other diseases?
Speaker 2 (09:03):
We're still a relatively rare disease.
But you know what.
We say that.
But then I talk to people andalmost everyone I talk to knows
someone who had ALS.
Speaker 1 (09:12):
Because I think we're being made more aware of ALS.
We hear it on the news, itdoesn't matter what we're
watching.
Speaker 2 (09:20):
Chances are you're going to hear about ALS more so
now than ever before More so nowthan ever, and one of the
things that we've learned at theALS Association is that some
neurologists can spend theirentire career and never see a
case of ALS or not know whatthey're seeing, and so we
created a Think ALS tool thatwe're working with clinics and
physicians and regular doctorsand orthopedics of.
If you've got this symptom andthis symptom added to this
(09:44):
symptom, you need to Think ALS,get them referred, because if
they can get referred early one,they're getting care early.
Also they're eligible for aclinical trial earlier, and so
that benefits everybody.
Speaker 1 (09:58):
You know, as we know, ALS does not discriminate, so
that makes you want yourawareness to be out there.
You want it to be better knownobviously so you know, it's been
found.
I'm reading some of my noteshere it's been found that
military veterans are twice aslikely to develop ALS.
Do we know why?
Speaker 2 (10:17):
Not yet.
Not yet it's helped us look atthe idea of environmental
trigger for a geneticpredisposition.
But ALS is actually one of afew presumptive disabilities,
which means that if a veteranwho has seen active duty
develops ALS, it's considered a100% service-connected
disability and they get all thebenefits that come along with
(10:40):
that, so that actually relievesa lot of their burden, their
financial burdens, et cetera.
The Department of Defense alsohas a specific research program
that's dedicated to looking fora cure for this, because if we
can figure out why veterans aregetting it, that'll help us
figure out why other people aregetting it as well.
Speaker 1 (10:57):
No, I love to talk baseball.
Speaker 2 (10:59):
Okay.
Speaker 1 (10:59):
All right, lou Gehrig , all right, all right.
And of course it's called LouGehrig's disease.
For those that may not know andI'm sure there's some that do
not who was Lou Gehrig Lou, somethat do not, who was Lou Gehrig
Lou.
Speaker 2 (11:17):
Gehrig was the pride of the Yankees.
I was waiting for that.
Producer Steve loves that too.
He was the pride of the Yankeesand so he was diagnosed with
ALS and he passed away in 1939.
And he was one of the fewathletes I think he was one of
the first athletes who was verypublic with his disease.
He made sure people knew he hadhis disease.
He didn't hide his disease andwas really committed to living
with it, which, again, it's LouGehrig's disease.
(11:38):
Now it's interesting in theUnited States ALS is known as
Lou Gehrig's disease or ALS.
In the rest of the world it'scalled motor neuron disease.
Really, I did not know that.
Speaker 1 (11:49):
I didn't know that until I started the ALS
Association.
Which, by the way, how longhave you been there?
Speaker 2 (11:57):
Almost 10 years.
Yeah, wow, almost 10 years.
I started as an executivedirector in the upstate New York
chapter and I've continued withthe association.
Speaker 1 (12:00):
Yeah, I love it.
I can see the smile on yourface.
Just it tells me how dedicatedit is and how passionate you are
.
Speaker 2 (12:09):
I came to this position because I actually had
a friend who had ALS and watchedhis progression with ALS and he
was one of the most courageouspeople that I had ever met and,
to be honest with you, this wasmy way of paying it forward.
He was a great friend to ourfamily and then, once I started
doing this work, everybody I metwas incredibly inspirational.
(12:30):
I hope, or wish, that I wouldhave the courage and the grace
to navigate the disease that Isee our families and our
caregivers do.
Speaker 1 (12:39):
Lou Gehrig, the luckiest man on earth.
Tell me a little bit about thatspeech.
Speaker 2 (12:46):
Well, it was one of the speeches that people were
surprised to hear him make,actually, because what he did
and it showed his outlook.
He said, yeah, this is ahorrible break, it's a bad break
I've been given, but then hetalked about all the blessings
that he had in his life.
And our families often do thatas well.
And I will never forget aperson with ALS that once said
(13:10):
to me the gift of this diseaseand kind of had a hard time
wrapping my head around that,his that statement, and he said
but the gift of this disease isI know what's coming and I have
the gift of leaving nothingundone and nothing unsaid.
And that guides my work,because what can we do to make
sure that happens?
Speaker 1 (13:30):
And you know to have the guts to get up there and do
that and talk about that and beopen about that.
And if you listen to it wordfor word for word, it just it's,
it's the real deal.
Speaker 2 (13:43):
It is.
It is oftentimes ballparks onLou Gehrig's day which is June
4th.
If they have a game, they'llplay that I love it.
Speaker 1 (13:50):
What current research or clinical trials give you
hope for the future ALStreatment?
Speaker 2 (13:57):
A lot of the genetic trials, what we call antisense
technology.
Antisense technology is whatpeople would think of as
designer DNA.
You see it in the cancer space,where you have a particular
gene and then you create atreatment that targets that
particular gene.
That's really exciting.
The other research we're seeingis assistive technology, which
helps people live better, andone of the things I think about.
(14:20):
There's a company in New Yorkstate called Synchron that's
doing computer brain interfacetraining.
People will think aboutNeuralink.
Elon Musk is doing Neuralink.
It's actually believe it or not.
It's like this teeny tiny stent, this big, that goes into a
vein in your head, in your brain, and what we're finding is
people can control their voicegenerating devices with it.
(14:43):
They can control theirwheelchairs with it.
We would love to be able to seethem control their environments
, like turn lights on and off,move around their facility.
It's great for them.
It gives them independence.
It also relieves theircaregiver of having to do
everything for them, and sothat's super exciting.
But I don't know how these12-year-olds at MIT can think of
(15:05):
this.
Speaker 1 (15:05):
So this is in the works right now.
Speaker 2 (15:07):
It's in the works.
Right now.
We actually have two patientsin New York State that have it.
Speaker 1 (15:12):
They have like a trial going on.
They have a trial.
Speaker 2 (15:14):
And it's Bluetooth technology.
There's nothing attached tothem, it's Bluetooth technology.
Speaker 1 (15:18):
I love that.
I love that.
How can listeners support ALS?
What can we do?
Speaker 2 (15:24):
So there are a couple of ways.
One is if you go to wwwalsorg,you can learn about ALS.
Everything that I've talkedabout is there.
It's also if you're in New YorkState.
It geolocates to New York Stateso you can see what we're doing
here.
If you have ALS or know someone, it talks about our clinics, it
tells you who to contact, talksabout the programs that we
offer.
(15:44):
We have two fundraising eventscoming up in.
Speaker 1 (15:47):
Central, new York.
Talk to me.
Speaker 2 (15:48):
We have the Syracuse CEO Soak, which is August 21st,
where we are bringing communityleaders who we are fundraising
for us into the Clinton Fountainwhere we soak them.
It's kind of our take on theIce Bucket Challenge.
Speaker 1 (16:03):
I hope my boss is listening.
Speaker 2 (16:04):
I hope so too.
Give me his number and I willcall him on the Ice Bucket
Challenge.
Speaker 1 (16:07):
I hope my boss is listening.
I hope so, to give me hisnumber and I will call him.
I will do that when we get offthe air.
Absolutely, that would be great.
Speaker 2 (16:11):
And then we also have the Syracuse Walk to Defeat ALS
, which is September 27th.
Yeah wow.
Speaker 1 (16:17):
So those are the two big ones right now.
That's what for the remainderof this year.
Yep, I love that.
What about if somebody wantedto volunteer?
Now you're talking about theseevents, but I would assume you
need individuals to help out.
Speaker 2 (16:29):
So there's one, you can go to the website and
there's a volunteer form thatyou can fill out.
Or, if you wanted to go on toour website and look for the
name of a gentleman namedNicholas Morsiglio he is our
development manager and hisphone number is there and call
him, email him, say I want tohelp, say I want to help, I want
to be in touch.
Absolutely, we need volunteersto help with all of our events.
Speaker 1 (16:52):
I love that.
What about a donation Taxdeductible?
Speaker 2 (16:54):
Tax deductible, ALSorg, and again, those gifts
are geolocated so if it comes toNew York it's allocated to be
invested here.
Speaker 1 (17:04):
I love this question.
If you could clear up onecommon myth or misunderstanding
about ALS, what would it be?
Speaker 2 (17:13):
Oh my gosh, that, although I would say the average
life expectancy for someonewith ALS is one to three years,
more than half of the peoplethat we work with live longer
than five years.
That's awesome and again, andwith new treatments, we're going
to extend it and again, we'regoing to keep fighting for the
(17:33):
cure.
Speaker 1 (17:34):
Yeah, Liz.
If there's one thing you wantpeople to remember most after
listening and viewing thispodcast, or listening to it on
air one of our four great radiostations, what would that be?
Speaker 2 (17:47):
I want people to remember that Syracuse is such a
great community that supportsthe community, and so please
continue to support us and otherorganizations, because families
are really counting on thesupport.
Als is such an isolatingdisease and it's important for
(18:08):
all of our families not to feelisolated.
Speaker 1 (18:10):
I love what you do.
Thank you so much.
I love what I do.
I can tell, Like I said a fewminutes ago, the smile on your
face, the passion and dedicationto help others ALS.
You know Liz Cassandra right,Did I say that?
Right you did.
She is the regional vicepresident, of course, for the
ALS Association right here incentral New York, and you've got
(18:30):
a big region to cover too, fromwhat I understand.
Speaker 2 (18:33):
New York, new Jersey and all of New.
Speaker 1 (18:34):
England.
Yeah, you put the miles on thecar, absolutely.
Speaker 2 (18:37):
Absolutely, but I live here in Syracuse.
Well there you go.
Speaker 1 (18:39):
Well, thank you for coming in and thank you for
explaining a lot about ALS thatmany of us did not know, and we
love you, my pleasure.
Speaker 2 (18:48):
Anytime, have me back and I'll see you in the
fountain.
Speaker 1 (18:53):
I'm going to give you my boss's phone number, but no,
I would love to be a part ofthat as well, we'll have to come
.
Yeah, we'll definitely do that.
All right, thanks for watching.
It is the Inner Harbor cast andit's all part of the Community
Connection, our and it's allpart of the community connection
Our four great radio stations.
Thank you.
Speaker 2 (19:07):
Thank you very much.
Speaker 1 (19:12):
Yep end stream and then that should be loaded.
I'll get this.
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