February 23, 2025 • 30 mins
ALS Northwest is working to help ALS patietns, caregivers and researchers. Democratic leadership in the Oregon Legislature has asked two Republicans to review ODOT's budget.
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Episode Transcript
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Speaker 1 (00:04):
Welcome to Local Voices. I'm brad Ford. ALS Northwest is
working to raise funds to help patients with ALS and
research define treatments and some day a cure for the
deadly disease, plus looking for accountability inside the Oregon Department
of Transportation. ALS Northwest is running a fundraiser right now.
(00:25):
We'll tell you how you can take part. ALS or
amiotrophic lateral sclerosis is also known as lou Grigg's disease.
Joining us on Local Voices as Cassie Adams, the executive
director of ALS Northwest. Cassie start off by telling us
about ALS.
Speaker 2 (00:40):
Thank you so much, Brad, We're really appreciative to be
on today. So, ALS, as you mentioned, stands for amiotrophic
lateral sclerosis. Many people know this diagnosis also as Lou
Gerrig's disease because of our famous New York Yankee player
Luke Grigl. Is a progressive neuromuscular disease. It impacts around
(01:04):
thirty thousand people here in the United States every year,
and about five thousand new cases are diagnosed every year.
It's a diagnosis of exclusion, meaning they have to rule
out a variety of different diagnoses before making it, and
it can take up to a year for folks to
get the diagnosis. Unfortunately, it is a diagnosis in which
(01:27):
we do not have a cure, and there's a lot
of unknown information about what causes the disease. So there's
a ton of research happening to better understand the causes
and preventative measures and ultimately, you know, looking to find
a cure for this diagnosis. In terms of how symptoms
progress for individuals, it's actually very varied by a person.
(01:52):
Some people notice some changes in their hands first. Some
individuals notice difficulty of walking, whereas other people experience what
we call bullbar symptoms in that they're experiencing challenges with
speaking and swallowing, and so it makes it a very
difficult diagnosis to receive and also makes it really tricky
(02:14):
for families and individuals to make adaptations as time goes
on because the variation is so wide. In terms of
who gets ALS, the average age of diagnosis is sixty
five to sixty five years old. We notice that more
men get an ALS diagnosis than women, but ALS really
(02:38):
doesn't discriminate based on race or ethnicity. Anyone can get ALS.
About ninety percent of cases are what we refer to
as sporadic and ten percent of cases are what we
call familial or have a genetic component. Of those ninety percent, unfortunately,
(02:59):
as I said, Brad, we really don't know what causes
this diagnosis to happen at this point. We have some theories,
there's a lot of really smart people working on the case,
but at this point in time, we don't know what
causes the disease and makes it hard obviously for us
to treat it.
Speaker 1 (03:17):
Are there different types of als?
Speaker 2 (03:20):
So there there are some different ways in which ALS
can progress. As I've mentioned before, again ten about ten
percent of cases have what we call a genetic impact
or a familial impact, So those individuals do have a
(03:40):
genetic commutation that we've linked to, you know, causing the disease.
In terms of how they actually progress and an experienced
symptoms is is not necessarily different. But where there's still
a lot of a lot of questions and a lot
of things we're still learning about this diagnosis.
Speaker 1 (03:59):
Are there for als.
Speaker 2 (04:02):
Currently there are three medications on the market, two of
which are in at folks with sporadic als. One is
actually a newer medication that is showing some positive impact
for individuals with a specific genetic mutation in that you know,
(04:22):
ten percent of familial cases. But unfortunately, all three of
these medications are just shown to have a modest flowing
of the progression of the diagnosis. Unfortunately, at this time,
we don't have a cure.
Speaker 1 (04:37):
We're talking with Cassie Adams, the executive director of ALS Northwest.
Cassie tell us what ALS Northwest does.
Speaker 2 (04:45):
Yeah, so, ALS Northwest. We are a nonprofit organization here
in based in Oregon, but we cover all of Oregon
in southwest Washington, and we're really here to support people
who are living with this diagnosis, their care partners, their network,
and their entire community really in ensuring that they have
(05:06):
resources and support to navigate this diagnosis. We also work
to advocate and create awareness, you know, coming on this
radio show today to share more about this disease with individuals.
It is still considered a rare disease, although we often
find that people share that they have some connection in
(05:27):
their community with ALFs. And then we also help to
fund research and expand you know, research opportunities for people
living with ALS as. We believe that is really you know,
the purposes to ensure that we find an end to
this disease. In terms of our programs, we offer a
(05:51):
robust number of services to people living with ALS and
their families. First and foremost, we have a dedicated care
service team that can be deployed with the second that
a person is diagnosed to go out and visit with
them in their home. Answer questions give them information that
(06:11):
they can use to navigate the next steps of this disease.
We offer a variety of support groups, both virtually and
in person for people who are living with the disease,
but also for family members and care partners and friends
and other people who just want to learn more and
engage with the community. There are five multidisciplinary ALS centers
(06:34):
across the state of Oregon, and we partner very closely
with those centers to ensure that they have support and
that individuals living with ALS are able to access specialized ALS. Here,
we offer medical equipment loans. I think I mentioned previously
that speech and swallowing can be impacted by this disease,
(06:58):
and so we find it's really important to have support
around a system technology and making sure that people have
access to technology and support when communication becomes difficult. We
also believe that it is incredibly important to offer ways
for family members and caregivers to get specialized support. So
(07:21):
we have a variety of different support groups and educational
programs to make sure that your partners are well supported
throughout the deduct ousis.
Speaker 1 (07:31):
You mentioned having financial assistance, I imagine some of the
technology and some of the equipment that's necessary is expensive,
and so you're able to help with that.
Speaker 2 (07:41):
Absolutely. It's you know, this is an incredibly, incredibly expensive disease,
as you can imagine. You know, people are having to
you know, utilize power wheelchairs that are you know, upwards
of fifty to sixty thousand dollars at market value, and
we're able to accept donations of medical equipment and then
(08:02):
turn around and provide those to the als community so
that they're able to you know, offset some of those
extensive costs. And there's so much that insurance does not cover,
and so we're able to provide some financial assistance grants
to help families with you know, all the different expenses
that are related to this disease. Insurance doesn't cover home modifications,
(08:24):
for example, so if a person is having to use
a wheelchair, they're having to pay out of pocket to
make those adjustments to their homes, getting a ramp or
widening doorways. So we're able to step in and provide
some financial assistance just to help people, you know, save
some money and not have to worry about all of
those expenses and focus more on what matters in their lives.
Speaker 1 (08:47):
As a disease progresses, speech and communication are also affected.
Talk to us a little bit about the technology that
is available to help with that.
Speaker 2 (08:56):
Yeah, it's it's pretty incredible, how far you know, we know,
so the technology is advancing every day. And as you said,
you know, speech is impacted by this disease, and so
people need a pretty immediate way to be able to communicate,
and you know, there are a variety of different ways
in which communication can happen. Of a significant technological advancement
(09:20):
has been around what we call voice making. This allows
a person, when they still have a very strong voice,
to be able to essentially bank their voice. They're able
to record a variety of different sentences and actually AI
has made it really possible to curate a computer generated
(09:41):
voice that sounds extraordinarily similar to an individual's voice, and
they're able to then utilize that through a variety of
means of technology, whether it's in an iGATE system where
they are selecting sentences and phrases with their eyes and
having the computer, or you know, utilize their voice in
(10:02):
communicating their their words to you know, utilizing that on
a phone systems. It's pretty incredible, Brad, how people are
able to communicate now using technology, and I only see
that continuing to advance in the future.
Speaker 1 (10:19):
What does the ALS Growth Weest website have to offer.
Speaker 2 (10:23):
Yeah, we have a lot of information on our website.
I would certainly encourage any of your listeners to check
us out. We're at Alsnorthwest dot org. We have information
about all of our support groups, all of our events.
We have a variety of community events that are coming
up as early as actually March eighth. We have a
(10:45):
ski ALS event that's a fundraiser and a great opportunity
for people to come up to the mountain and enjoy
a day of skiing. We also have a variety of
different resources for care partners for people living with a
less just to provide information and education about the disease
and what we do to support.
Speaker 1 (11:06):
Now, you mentioned this a little bit earlier, but talk
to us a little bit about how you fund research
into ALS medicine.
Speaker 2 (11:14):
Absolutely, there are hundreds of clinical trials and ALS research
projects happening all across the world, and it is incredibly
important to us as ALS Northwest, and we are also
a part of a membership organization called ALS United, and
we're able to really collaborate and work together to identify
(11:37):
important research projects that are happening all across the world
and make gifts of you know, funds towards those research programs.
And I'm happy to share that ALS north West has
funded over three million dollars in scientific research over the
last several years that we have been operating. And we're
(11:59):
just we find this is an incredibly important part of
our mission. And you know, ultimately, as I said, you know,
we want to be out of a job. We don't
want to have to fundraise or talk about this anymore
because we have a cure for it is our goal.
Speaker 1 (12:16):
Do you have opportunities for people who want to volunteer?
Speaker 2 (12:20):
We do. We have a variety of ways for people
to volunteer, and we are always open to people reaching
out to kind of explore what that looks like. We
have a variety of events. Our walk events are coming
up this spring, and we're always looking for volunteers to
lean us in and help set up or break down
and just come out and have a good time with us.
(12:41):
We also offer a program called the Helping Hands, and
we are looking for dedicated volunteers who are open to
helping support people living with ALS in our community with
day to day chores, tasks, yard work, a variety of
different things just to make their lives a little easier.
So we're always welcoming volunteers and certainly encourage any listeners
(13:03):
to reach out to explore that further.
Speaker 1 (13:05):
Now, you have a fundraiser that's underway right now. Tell
us about the fifty to fifty Raffle and how people
can take part to help raise money for ALS Northwest.
Speaker 2 (13:15):
We are so excited about this fifty to fifty Raffle
and we're really appreciative of the support through iHeart Radio
and Core's Light who are helping to sponsor this. And
so what it is is an opportunity for people to
purchase Raffle tickets online and they can, you know, increase
their opportunity to win fifty percent of the jackpot and
(13:40):
then the other fifty percent goes to support people right
here that are living with ALS through ALS Northwest, and
folks do have to be located in the state of
Oregon at the time of purchase of they purchased it online,
but you can live anywhere to win. So it's a
great opportunity for people to you know, win some money
(14:03):
and also give back to a great cost.
Speaker 1 (14:05):
Absolutely. What's the deadline?
Speaker 2 (14:07):
Yeah, so we will be selecting the winner on March
twelfth at ten a m. Pacific standard time, So people
have up until March twelfth to purchase tickets.
Speaker 1 (14:21):
Terrific, Cassie. Anything else you'd like to add.
Speaker 2 (14:24):
Oh, just that I am so appreciative Brad at the time,
and you know, certainly encourage folks to check out our
website alsmorthwest dot org to learn more and we are
always open to folks reaching out to learn more and
making sure that we as a community are working towards
ending this disease.
Speaker 3 (14:42):
Thanks.
Speaker 1 (14:43):
That's Cassie Adams, executive director of ALS Northwest. You can
take part in the ALS Northwest fifty to fifty fundraisers
supported by cors Light and iHeart Radio. You'll find a
link on this radio station's website and again the website
for ALS Northwest is als Northwest dot Org. Democratic leadership
(15:04):
in the Oregon legislature have put two Republicans in charge
of holding the Oregon Department of Transportation accountable for its
operations and spending. State Senator Bruce Starr and Representative Shelley
boss Ard Davis join us on local voices, How will
you approach the work?
Speaker 4 (15:19):
So, I think that the important thing is is that
we recognize that it's important that Oregon taxpayers get the
most bang for their for their tax dollars that they
send to Oregon and making sure that that they're that
the Department of Transportation is is making everything that they
(15:39):
can to make sure that our roads are moving and
freight is moving and people can get to where they
need to go. And what I'm talking about is core mission.
And instead of having the governor basically just tell the legislature, oh,
just grow raise more money to fill the supposed gap
at ODAT, it's really about making sure that they're focused
(16:03):
and their priorities are aligned. And that's something that Representive
boss Art Davis and I have been working on. And
basically now that legislative leaderships has asked us to work
to work to get that done and we look forward
to doing that work.
Speaker 3 (16:19):
And I'll add to that, it's great to see this
because so far, everything that we've been asked first, whether
it's by journalists or even things that we're given by
the chairs or whatever the case may be, the first
question is always which revenue option is the best or
which revenue option would you be okay with? Or would
(16:41):
you be okay with the road user fee? Or how
do you feel about an increase in gas taxes? And
that has been the first question. And if it weren't
for us myself and Senator Starr and Republicans asking questions
and some really good investigative journalism, the only conversation that.
Speaker 5 (16:58):
Would be had so far is how do you take
more money from Oregonians?
Speaker 3 (17:02):
And based off of what Senator Starr said and what
we continue to say, that's the wrong question. That's the
wrong first question. The right first question is how do
we establish credibility and how do we get o dot
how money is spent and what they do back to
core Mission.
Speaker 1 (17:18):
Tax payer value for their taxpayer dollars is incredibly important.
What accountability issues do you expect to find?
Speaker 4 (17:25):
That's a good question. The answers, We're not sure but
we're going to look I mean, one of the one
of the examples that I think is pretty easy for
people to understand is currently the Department of Motor Vehicles
spends time and money Oregon tax dollars registering Oregonians to vote.
Is it core to the mission of the Department of
Motor Vehicles to get people registered to vote? I would
(17:47):
suggest it isn't, you know. And so again that's just
one example of what we hope to find. But we're
going to go through the budget and I expect we're
going to find places where we're going to raise questions
and you know, have the department answer those questions. And
my senses is that we're going to find things that
(18:08):
that we can that we can cut and and and
reduce those costs to Oregonians find savings.
Speaker 1 (18:16):
This is similar to what President Trump really is going
through with the federal government and examining how how money
is being spent. There, Uh, are there are there areas
where you think there can be efficiencies in odat.
Speaker 3 (18:30):
Well, absolutely, I think that you know, when we're looking
at accountability, it's not just trusting them that they'll be
accountable with how they're spending the money. It's also do
we need to be spending the money on this?
Speaker 5 (18:40):
Right? So there's layers of accountability.
Speaker 3 (18:43):
We know that they have departments of DEI and Climate.
When you look at and I say, well, why are
we spending Why do we have a department or a
division that is focused on climate initiatives when we have
an entire d e Q, Right, I don't understand that,
Or we have HR within the government, why do we
have Why are we spending tens of millions or maybe
(19:05):
more inside the department to do this? Those are questions.
Do we need to be smitting money on this? That's
certainly a question, But then also are we going to
be able to find savings? I absolutely believe so. If
you look in the past of the twenty seventeen projects,
as they've as they've been built, how much have they
been built, how much outside of the scope of the
(19:27):
original project.
Speaker 5 (19:28):
Have they been built? And of course we live through
COVID and we live through inflation.
Speaker 3 (19:32):
We understand that, but what are the other problems that
have in some case doubled the cost of these projects?
So I think that there's layers of accountability that we'll
be looking for.
Speaker 1 (19:41):
Do you think the savings will be enough to solve
Odont's funding issues.
Speaker 4 (19:46):
The answer remains to be seen. To be honest with you,
we're going to do this work, We're going to make recommendations.
I believe at the end of the day we'll make
some recommendations, but at this point I'm not sure one
way or the other to answer that question, to be honest, and.
Speaker 3 (20:06):
There's some massive problems right like, we're looking at a
budget that's in crisis. We're looking at cost responsibility between
what cars and trucks are paying, and we know that
trucks are paying overpaying by thirty seven percent of their
fair share, which is also unconstitutional. This is massive problems
that have happened under the Majority Party watch. And so
(20:27):
we've gotten to this place where we're now looking at
this absolute crisis, which takes a big with a big
problem to fix it. Takes something big in order to
fix it. And Senator Starr says all the time we're
seeing kind of that lack of sense of urgency. Whether
it's seeing it in budgets because we know budgets reflect priorities.
(20:48):
We don't see it in the governor's top issues. We're
not feeling it inside the building. So will it be
enough to save it. We're not sure, but we certainly
know that that it has to be looked at.
Speaker 4 (21:01):
One of the other things is and Shelley mentioned this
is the delivery of projects. And you know, I'm really
interested in and seeing if we can bring individuals one
or two or or some that have experience in delivering
projects to look at odots, delivery processes and and potentially
(21:25):
make recommendations on how they do that better. It's in
my mind, especially as it relates around the big mega projects,
where it looks to me like we've had pretty pretty
massive failure. And then the representative mentioned that the list
of projects that we're in the bill in twenty seventeen
where they've gone, they've the scope has changed, the cost
(21:49):
of obviously gone through the roof. You know, are there
are there reasons why that is? And then are there
ways to make sure that doesn't happen in the future
Because legisized legislators excuse me, as legislators, we rely on
the Department Transportation to tell us, hey, this project's going
to cost sixty million dollars, and so we say, okay,
we're going to allocate sixty million dollars for that project. Well,
(22:11):
then you know, six years down the road, the sixty
million dollars wasn't the right number and it ended up
being eighty three million dollars. And is there a reason why,
you know, as an engineers are supposed to say, here's
what the project costs in today's dollars, and here's what
the project's going to cost, you know, six years down
the road when the project has actually gone to construction
(22:32):
in those dollars. And we got to have I believe
we've got to have better information, credible information from the apartment.
And based on their most recent examples, they failed in that.
And so are there systemic reasons why? And I'd like
to have somebody with expertise come and help us look
(22:53):
at those issues. That's not something that I think we
have expertise inside the building or as legislator, but I
think we can we can bring that in from the outside.
Speaker 1 (23:03):
Yeah, you're talking about bringing in an outside project manager
that would work on some large project for a private company, right.
Speaker 4 (23:13):
Yeah, I mean I'm talking about I'm talking about individuals
that have experienced delivering large projects, whether they're whether the
highway projects or other projects. I mean there are places
around the country that do this and do this well,
and apparently they know something that we don't in Oregon.
So help us understand why we can't seem to be
(23:34):
able to deliver large projects in our state.
Speaker 1 (23:36):
Is that part of the process. You know, when O
DOT talks with you about what their overall budget are
going to be in their plans and on these large projects,
do they have outside consultants come in and review their work.
Speaker 4 (23:48):
Essentially well, so the department relies a lot on outside
contractors and consultants. I was and this is part of
the accountability process. I was told that the Rose Quarter
project has something like ninety consultants on it. I don't
know that that's one hundred percent true. I was just
told that. I haven't verified that, so take that for
(24:09):
what it's worth. But again, they use consultants all the time.
That from my perspective, this process really is gets core
down to the role of the legislature as a separate
and equal branch of government, role of the legislature as
the whole the executive branch accountable, and so it's wholly
(24:32):
within our purview in my opinion, for us to challenge
the executive branch and challenge the executive branch agencies and
ensure that we're getting the bank for their buck. Does
that mean that that we always as legislators have all
of the expertise. No, So sometimes it's important for us
to ask somebody who has that expertise without an extra grind,
to look at it and say, hey, they're doing these
(24:55):
things really well, but they could improve in this, this
and this, and then it's our responsibility to go to
hod On and the and quite honestly the Governor's office
and say hey, we've got recommendations that they improve at this,
this and this and and then it's a then it's
a process where that information, you know, needs to be
implemented because again we're we're a co equal branch of government.
(25:18):
We ought to be ought to be holding the executive
branch accountable.
Speaker 3 (25:22):
In addition to what you just said, I've said, I've
said this. You know this isn't completely ODOT's fault. And
senators start tapped on that and they have to follow
the law that the legend statute that the legislature set
and there's a certain ideology and agenda there that is
being forced onto ODOT that they're having to do, which
(25:44):
goes back to kind of our core mission conversation. They
have to follow what the legislature is telling them to do,
and at the same time they serve with the pleasure
of the governor. And so a lot of these things
aren't meshing really well. And I think you add up
a lot of these problems a lack of oversight, pushing
of an agenda, not rocking the boat too much pun
(26:07):
intended a.
Speaker 5 (26:08):
Little bit there.
Speaker 3 (26:09):
So I think this is all coming to head in
this in this crisis that we're that we're at, and
you really have to look into all of these.
Speaker 5 (26:18):
Problems before we can move forward.
Speaker 3 (26:20):
And again, it's not just throwing money at it, and
I think that that's certainly what some people want to do.
Speaker 1 (26:26):
You both touched on this earlier, but you're both Republicans
and Democrats. Uh in leadership put you in charge of
doing this. What are your thoughts on that.
Speaker 4 (26:36):
I believe that they want to do something where the
Republicans Democrats work together. And I come at this from
a from a having previous experience where transportation policy was
was generally kind of the mostly the least partisan, most
bipartisan effort that legislators did. I believe that they that
(26:57):
they actually they want our involved. Now, at the end
of the day, the work that gets done, you know,
it'll be the proof will be in the pudding. If
if all the work that's done, and I expect Democrats
are going to have have ideas too about how to
find efficiency at the department at the department. But if
(27:18):
at the end of the day, if nothing, if nothing
happens with the information that that comes about for the
work that we do, then we'll know. And and there's
no there's no guarantee that Republicans are going to vote
to raise taxes just because you know, the leadership said, hey,
go try to find some savings, and especially if the
(27:39):
work that we do is basically is rejected by the majority.
So you know, I'm I'm optimistic, but that's just my nature.
You know. We'll see ultimately what what happens on this
whole thing.
Speaker 1 (27:52):
We'll see anything either of you would.
Speaker 4 (27:54):
Like to add, I would just say that the key
here is core mission. If if ODA is truly in
a crisis, and I believe based on everything that they've
said that that it is there's serious challenges here, then
it's when that's when you prioritize how you spend scarce
(28:17):
taxpayer dollars. And you know, I would I would encourage
you to look at the the kinds of laws that
have been passed, the mandates that the Department of Transportation
have been given over the last decade, and see if
all of those mandates And this just goes to the
(28:38):
point that Chllie rays earlier, are are really about core mission?
Are they things that you know, in a perfect world,
if we live in a utopia, would be nice to do.
But they're really not about making sure that we can
put asphalt on the ground, concrete on the ground, you know,
make sure that that freight and people and plate can
get where they need to go. So for for us,
(28:59):
it's really about core and prioritizing how the Department's spending
our tech spayer dollars.
Speaker 3 (29:05):
And I'll add to that, Brad, we know that cost
of living is top of mind when you talk to
Orgonians across the state. We know that that's important, and
so as Senator Starr and I move forward, that's top
of mind for us as well. Is understanding that this
is an expensive place to live, and that will definitely
(29:26):
be top of mind for us as we move through
this process.
Speaker 1 (29:30):
Thanks for joining us on Local Voices that state Senator
Bruce Starr and Representative Shelley Bosshard Davis. They've been assigned
the job of reviewing ODOUT operations and spending to keep
the agency accountable at a time when it's budget or
exceeds it's revenue. Thanks for listening to Local Voices. I'm
brad Ford. You can hear past episodes on the iHeartRadio
(29:51):
app under the podcast tab. Local Voices is a public
affairs presentation from iHeartRadio.
Welcome to Local Voices. I'm brad Ford. ALS Northwest is
working to raise funds to help patients with ALS and
research define treatments and some day a cure for the
deadly disease, plus looking for accountability inside the Oregon Department
of Transportation. ALS Northwest is running a fundraiser right now.
(00:25):
We'll tell you how you can take part. ALS or
amiotrophic lateral sclerosis is also known as lou Grigg's disease.
Joining us on Local Voices as Cassie Adams, the executive
director of ALS Northwest. Cassie start off by telling us
about ALS.
Speaker 2 (00:40):
Thank you so much, Brad, We're really appreciative to be
on today. So, ALS, as you mentioned, stands for amiotrophic
lateral sclerosis. Many people know this diagnosis also as Lou
Gerrig's disease because of our famous New York Yankee player
Luke Grigl. Is a progressive neuromuscular disease. It impacts around
(01:04):
thirty thousand people here in the United States every year,
and about five thousand new cases are diagnosed every year.
It's a diagnosis of exclusion, meaning they have to rule
out a variety of different diagnoses before making it, and
it can take up to a year for folks to
get the diagnosis. Unfortunately, it is a diagnosis in which
(01:27):
we do not have a cure, and there's a lot
of unknown information about what causes the disease. So there's
a ton of research happening to better understand the causes
and preventative measures and ultimately, you know, looking to find
a cure for this diagnosis. In terms of how symptoms
progress for individuals, it's actually very varied by a person.
(01:52):
Some people notice some changes in their hands first. Some
individuals notice difficulty of walking, whereas other people experience what
we call bullbar symptoms in that they're experiencing challenges with
speaking and swallowing, and so it makes it a very
difficult diagnosis to receive and also makes it really tricky
(02:14):
for families and individuals to make adaptations as time goes
on because the variation is so wide. In terms of
who gets ALS, the average age of diagnosis is sixty
five to sixty five years old. We notice that more
men get an ALS diagnosis than women, but ALS really
(02:38):
doesn't discriminate based on race or ethnicity. Anyone can get ALS.
About ninety percent of cases are what we refer to
as sporadic and ten percent of cases are what we
call familial or have a genetic component. Of those ninety percent, unfortunately,
(02:59):
as I said, Brad, we really don't know what causes
this diagnosis to happen at this point. We have some theories,
there's a lot of really smart people working on the case,
but at this point in time, we don't know what
causes the disease and makes it hard obviously for us
to treat it.
Speaker 1 (03:17):
Are there different types of als?
Speaker 2 (03:20):
So there there are some different ways in which ALS
can progress. As I've mentioned before, again ten about ten
percent of cases have what we call a genetic impact
or a familial impact, So those individuals do have a
(03:40):
genetic commutation that we've linked to, you know, causing the disease.
In terms of how they actually progress and an experienced
symptoms is is not necessarily different. But where there's still
a lot of a lot of questions and a lot
of things we're still learning about this diagnosis.
Speaker 1 (03:59):
Are there for als.
Speaker 2 (04:02):
Currently there are three medications on the market, two of
which are in at folks with sporadic als. One is
actually a newer medication that is showing some positive impact
for individuals with a specific genetic mutation in that you know,
(04:22):
ten percent of familial cases. But unfortunately, all three of
these medications are just shown to have a modest flowing
of the progression of the diagnosis. Unfortunately, at this time,
we don't have a cure.
Speaker 1 (04:37):
We're talking with Cassie Adams, the executive director of ALS Northwest.
Cassie tell us what ALS Northwest does.
Speaker 2 (04:45):
Yeah, so, ALS Northwest. We are a nonprofit organization here
in based in Oregon, but we cover all of Oregon
in southwest Washington, and we're really here to support people
who are living with this diagnosis, their care partners, their network,
and their entire community really in ensuring that they have
(05:06):
resources and support to navigate this diagnosis. We also work
to advocate and create awareness, you know, coming on this
radio show today to share more about this disease with individuals.
It is still considered a rare disease, although we often
find that people share that they have some connection in
(05:27):
their community with ALFs. And then we also help to
fund research and expand you know, research opportunities for people
living with ALS as. We believe that is really you know,
the purposes to ensure that we find an end to
this disease. In terms of our programs, we offer a
(05:51):
robust number of services to people living with ALS and
their families. First and foremost, we have a dedicated care
service team that can be deployed with the second that
a person is diagnosed to go out and visit with
them in their home. Answer questions give them information that
(06:11):
they can use to navigate the next steps of this disease.
We offer a variety of support groups, both virtually and
in person for people who are living with the disease,
but also for family members and care partners and friends
and other people who just want to learn more and
engage with the community. There are five multidisciplinary ALS centers
(06:34):
across the state of Oregon, and we partner very closely
with those centers to ensure that they have support and
that individuals living with ALS are able to access specialized ALS. Here,
we offer medical equipment loans. I think I mentioned previously
that speech and swallowing can be impacted by this disease,
(06:58):
and so we find it's really important to have support
around a system technology and making sure that people have
access to technology and support when communication becomes difficult. We
also believe that it is incredibly important to offer ways
for family members and caregivers to get specialized support. So
(07:21):
we have a variety of different support groups and educational
programs to make sure that your partners are well supported
throughout the deduct ousis.
Speaker 1 (07:31):
You mentioned having financial assistance, I imagine some of the
technology and some of the equipment that's necessary is expensive,
and so you're able to help with that.
Speaker 2 (07:41):
Absolutely. It's you know, this is an incredibly, incredibly expensive disease,
as you can imagine. You know, people are having to
you know, utilize power wheelchairs that are you know, upwards
of fifty to sixty thousand dollars at market value, and
we're able to accept donations of medical equipment and then
(08:02):
turn around and provide those to the als community so
that they're able to you know, offset some of those
extensive costs. And there's so much that insurance does not cover,
and so we're able to provide some financial assistance grants
to help families with you know, all the different expenses
that are related to this disease. Insurance doesn't cover home modifications,
(08:24):
for example, so if a person is having to use
a wheelchair, they're having to pay out of pocket to
make those adjustments to their homes, getting a ramp or
widening doorways. So we're able to step in and provide
some financial assistance just to help people, you know, save
some money and not have to worry about all of
those expenses and focus more on what matters in their lives.
Speaker 1 (08:47):
As a disease progresses, speech and communication are also affected.
Talk to us a little bit about the technology that
is available to help with that.
Speaker 2 (08:56):
Yeah, it's it's pretty incredible, how far you know, we know,
so the technology is advancing every day. And as you said,
you know, speech is impacted by this disease, and so
people need a pretty immediate way to be able to communicate,
and you know, there are a variety of different ways
in which communication can happen. Of a significant technological advancement
(09:20):
has been around what we call voice making. This allows
a person, when they still have a very strong voice,
to be able to essentially bank their voice. They're able
to record a variety of different sentences and actually AI
has made it really possible to curate a computer generated
(09:41):
voice that sounds extraordinarily similar to an individual's voice, and
they're able to then utilize that through a variety of
means of technology, whether it's in an iGATE system where
they are selecting sentences and phrases with their eyes and
having the computer, or you know, utilize their voice in
(10:02):
communicating their their words to you know, utilizing that on
a phone systems. It's pretty incredible, Brad, how people are
able to communicate now using technology, and I only see
that continuing to advance in the future.
Speaker 1 (10:19):
What does the ALS Growth Weest website have to offer.
Speaker 2 (10:23):
Yeah, we have a lot of information on our website.
I would certainly encourage any of your listeners to check
us out. We're at Alsnorthwest dot org. We have information
about all of our support groups, all of our events.
We have a variety of community events that are coming
up as early as actually March eighth. We have a
(10:45):
ski ALS event that's a fundraiser and a great opportunity
for people to come up to the mountain and enjoy
a day of skiing. We also have a variety of
different resources for care partners for people living with a
less just to provide information and education about the disease
and what we do to support.
Speaker 1 (11:06):
Now, you mentioned this a little bit earlier, but talk
to us a little bit about how you fund research
into ALS medicine.
Speaker 2 (11:14):
Absolutely, there are hundreds of clinical trials and ALS research
projects happening all across the world, and it is incredibly
important to us as ALS Northwest, and we are also
a part of a membership organization called ALS United, and
we're able to really collaborate and work together to identify
(11:37):
important research projects that are happening all across the world
and make gifts of you know, funds towards those research programs.
And I'm happy to share that ALS north West has
funded over three million dollars in scientific research over the
last several years that we have been operating. And we're
(11:59):
just we find this is an incredibly important part of
our mission. And you know, ultimately, as I said, you know,
we want to be out of a job. We don't
want to have to fundraise or talk about this anymore
because we have a cure for it is our goal.
Speaker 1 (12:16):
Do you have opportunities for people who want to volunteer?
Speaker 2 (12:20):
We do. We have a variety of ways for people
to volunteer, and we are always open to people reaching
out to kind of explore what that looks like. We
have a variety of events. Our walk events are coming
up this spring, and we're always looking for volunteers to
lean us in and help set up or break down
and just come out and have a good time with us.
(12:41):
We also offer a program called the Helping Hands, and
we are looking for dedicated volunteers who are open to
helping support people living with ALS in our community with
day to day chores, tasks, yard work, a variety of
different things just to make their lives a little easier.
So we're always welcoming volunteers and certainly encourage any listeners
(13:03):
to reach out to explore that further.
Speaker 1 (13:05):
Now, you have a fundraiser that's underway right now. Tell
us about the fifty to fifty Raffle and how people
can take part to help raise money for ALS Northwest.
Speaker 2 (13:15):
We are so excited about this fifty to fifty Raffle
and we're really appreciative of the support through iHeart Radio
and Core's Light who are helping to sponsor this. And
so what it is is an opportunity for people to
purchase Raffle tickets online and they can, you know, increase
their opportunity to win fifty percent of the jackpot and
(13:40):
then the other fifty percent goes to support people right
here that are living with ALS through ALS Northwest, and
folks do have to be located in the state of
Oregon at the time of purchase of they purchased it online,
but you can live anywhere to win. So it's a
great opportunity for people to you know, win some money
(14:03):
and also give back to a great cost.
Speaker 1 (14:05):
Absolutely. What's the deadline?
Speaker 2 (14:07):
Yeah, so we will be selecting the winner on March
twelfth at ten a m. Pacific standard time, So people
have up until March twelfth to purchase tickets.
Speaker 1 (14:21):
Terrific, Cassie. Anything else you'd like to add.
Speaker 2 (14:24):
Oh, just that I am so appreciative Brad at the time,
and you know, certainly encourage folks to check out our
website alsmorthwest dot org to learn more and we are
always open to folks reaching out to learn more and
making sure that we as a community are working towards
ending this disease.
Speaker 3 (14:42):
Thanks.
Speaker 1 (14:43):
That's Cassie Adams, executive director of ALS Northwest. You can
take part in the ALS Northwest fifty to fifty fundraisers
supported by cors Light and iHeart Radio. You'll find a
link on this radio station's website and again the website
for ALS Northwest is als Northwest dot Org. Democratic leadership
(15:04):
in the Oregon legislature have put two Republicans in charge
of holding the Oregon Department of Transportation accountable for its
operations and spending. State Senator Bruce Starr and Representative Shelley
boss Ard Davis join us on local voices, How will
you approach the work?
Speaker 4 (15:19):
So, I think that the important thing is is that
we recognize that it's important that Oregon taxpayers get the
most bang for their for their tax dollars that they
send to Oregon and making sure that that they're that
the Department of Transportation is is making everything that they
(15:39):
can to make sure that our roads are moving and
freight is moving and people can get to where they
need to go. And what I'm talking about is core mission.
And instead of having the governor basically just tell the legislature, oh,
just grow raise more money to fill the supposed gap
at ODAT, it's really about making sure that they're focused
(16:03):
and their priorities are aligned. And that's something that Representive
boss Art Davis and I have been working on. And
basically now that legislative leaderships has asked us to work
to work to get that done and we look forward
to doing that work.
Speaker 3 (16:19):
And I'll add to that, it's great to see this
because so far, everything that we've been asked first, whether
it's by journalists or even things that we're given by
the chairs or whatever the case may be, the first
question is always which revenue option is the best or
which revenue option would you be okay with? Or would
(16:41):
you be okay with the road user fee? Or how
do you feel about an increase in gas taxes? And
that has been the first question. And if it weren't
for us myself and Senator Starr and Republicans asking questions
and some really good investigative journalism, the only conversation that.
Speaker 5 (16:58):
Would be had so far is how do you take
more money from Oregonians?
Speaker 3 (17:02):
And based off of what Senator Starr said and what
we continue to say, that's the wrong question. That's the
wrong first question. The right first question is how do
we establish credibility and how do we get o dot
how money is spent and what they do back to
core Mission.
Speaker 1 (17:18):
Tax payer value for their taxpayer dollars is incredibly important.
What accountability issues do you expect to find?
Speaker 4 (17:25):
That's a good question. The answers, We're not sure but
we're going to look I mean, one of the one
of the examples that I think is pretty easy for
people to understand is currently the Department of Motor Vehicles
spends time and money Oregon tax dollars registering Oregonians to vote.
Is it core to the mission of the Department of
Motor Vehicles to get people registered to vote? I would
(17:47):
suggest it isn't, you know. And so again that's just
one example of what we hope to find. But we're
going to go through the budget and I expect we're
going to find places where we're going to raise questions
and you know, have the department answer those questions. And
my senses is that we're going to find things that
(18:08):
that we can that we can cut and and and
reduce those costs to Oregonians find savings.
Speaker 1 (18:16):
This is similar to what President Trump really is going
through with the federal government and examining how how money
is being spent. There, Uh, are there are there areas
where you think there can be efficiencies in odat.
Speaker 3 (18:30):
Well, absolutely, I think that you know, when we're looking
at accountability, it's not just trusting them that they'll be
accountable with how they're spending the money. It's also do
we need to be spending the money on this?
Speaker 5 (18:40):
Right? So there's layers of accountability.
Speaker 3 (18:43):
We know that they have departments of DEI and Climate.
When you look at and I say, well, why are
we spending Why do we have a department or a
division that is focused on climate initiatives when we have
an entire d e Q, Right, I don't understand that,
Or we have HR within the government, why do we
have Why are we spending tens of millions or maybe
(19:05):
more inside the department to do this? Those are questions.
Do we need to be smitting money on this? That's
certainly a question, But then also are we going to
be able to find savings? I absolutely believe so. If
you look in the past of the twenty seventeen projects,
as they've as they've been built, how much have they
been built, how much outside of the scope of the
(19:27):
original project.
Speaker 5 (19:28):
Have they been built? And of course we live through
COVID and we live through inflation.
Speaker 3 (19:32):
We understand that, but what are the other problems that
have in some case doubled the cost of these projects?
So I think that there's layers of accountability that we'll
be looking for.
Speaker 1 (19:41):
Do you think the savings will be enough to solve
Odont's funding issues.
Speaker 4 (19:46):
The answer remains to be seen. To be honest with you,
we're going to do this work, We're going to make recommendations.
I believe at the end of the day we'll make
some recommendations, but at this point I'm not sure one
way or the other to answer that question, to be honest, and.
Speaker 3 (20:06):
There's some massive problems right like, we're looking at a
budget that's in crisis. We're looking at cost responsibility between
what cars and trucks are paying, and we know that
trucks are paying overpaying by thirty seven percent of their
fair share, which is also unconstitutional. This is massive problems
that have happened under the Majority Party watch. And so
(20:27):
we've gotten to this place where we're now looking at
this absolute crisis, which takes a big with a big
problem to fix it. Takes something big in order to
fix it. And Senator Starr says all the time we're
seeing kind of that lack of sense of urgency. Whether
it's seeing it in budgets because we know budgets reflect priorities.
(20:48):
We don't see it in the governor's top issues. We're
not feeling it inside the building. So will it be
enough to save it. We're not sure, but we certainly
know that that it has to be looked at.
Speaker 4 (21:01):
One of the other things is and Shelley mentioned this
is the delivery of projects. And you know, I'm really
interested in and seeing if we can bring individuals one
or two or or some that have experience in delivering
projects to look at odots, delivery processes and and potentially
(21:25):
make recommendations on how they do that better. It's in
my mind, especially as it relates around the big mega projects,
where it looks to me like we've had pretty pretty
massive failure. And then the representative mentioned that the list
of projects that we're in the bill in twenty seventeen
where they've gone, they've the scope has changed, the cost
(21:49):
of obviously gone through the roof. You know, are there
are there reasons why that is? And then are there
ways to make sure that doesn't happen in the future
Because legisized legislators excuse me, as legislators, we rely on
the Department Transportation to tell us, hey, this project's going
to cost sixty million dollars, and so we say, okay,
we're going to allocate sixty million dollars for that project. Well,
(22:11):
then you know, six years down the road, the sixty
million dollars wasn't the right number and it ended up
being eighty three million dollars. And is there a reason why,
you know, as an engineers are supposed to say, here's
what the project costs in today's dollars, and here's what
the project's going to cost, you know, six years down
the road when the project has actually gone to construction
(22:32):
in those dollars. And we got to have I believe
we've got to have better information, credible information from the apartment.
And based on their most recent examples, they failed in that.
And so are there systemic reasons why? And I'd like
to have somebody with expertise come and help us look
(22:53):
at those issues. That's not something that I think we
have expertise inside the building or as legislator, but I
think we can we can bring that in from the outside.
Speaker 1 (23:03):
Yeah, you're talking about bringing in an outside project manager
that would work on some large project for a private company, right.
Speaker 4 (23:13):
Yeah, I mean I'm talking about I'm talking about individuals
that have experienced delivering large projects, whether they're whether the
highway projects or other projects. I mean there are places
around the country that do this and do this well,
and apparently they know something that we don't in Oregon.
So help us understand why we can't seem to be
(23:34):
able to deliver large projects in our state.
Speaker 1 (23:36):
Is that part of the process. You know, when O
DOT talks with you about what their overall budget are
going to be in their plans and on these large projects,
do they have outside consultants come in and review their work.
Speaker 4 (23:48):
Essentially well, so the department relies a lot on outside
contractors and consultants. I was and this is part of
the accountability process. I was told that the Rose Quarter
project has something like ninety consultants on it. I don't
know that that's one hundred percent true. I was just
told that. I haven't verified that, so take that for
(24:09):
what it's worth. But again, they use consultants all the time.
That from my perspective, this process really is gets core
down to the role of the legislature as a separate
and equal branch of government, role of the legislature as
the whole the executive branch accountable, and so it's wholly
(24:32):
within our purview in my opinion, for us to challenge
the executive branch and challenge the executive branch agencies and
ensure that we're getting the bank for their buck. Does
that mean that that we always as legislators have all
of the expertise. No, So sometimes it's important for us
to ask somebody who has that expertise without an extra grind,
to look at it and say, hey, they're doing these
(24:55):
things really well, but they could improve in this, this
and this, and then it's our responsibility to go to
hod On and the and quite honestly the Governor's office
and say hey, we've got recommendations that they improve at this,
this and this and and then it's a then it's
a process where that information, you know, needs to be
implemented because again we're we're a co equal branch of government.
(25:18):
We ought to be ought to be holding the executive
branch accountable.
Speaker 3 (25:22):
In addition to what you just said, I've said, I've
said this. You know this isn't completely ODOT's fault. And
senators start tapped on that and they have to follow
the law that the legend statute that the legislature set
and there's a certain ideology and agenda there that is
being forced onto ODOT that they're having to do, which
(25:44):
goes back to kind of our core mission conversation. They
have to follow what the legislature is telling them to do,
and at the same time they serve with the pleasure
of the governor. And so a lot of these things
aren't meshing really well. And I think you add up
a lot of these problems a lack of oversight, pushing
of an agenda, not rocking the boat too much pun
(26:07):
intended a.
Speaker 5 (26:08):
Little bit there.
Speaker 3 (26:09):
So I think this is all coming to head in
this in this crisis that we're that we're at, and
you really have to look into all of these.
Speaker 5 (26:18):
Problems before we can move forward.
Speaker 3 (26:20):
And again, it's not just throwing money at it, and
I think that that's certainly what some people want to do.
Speaker 1 (26:26):
You both touched on this earlier, but you're both Republicans
and Democrats. Uh in leadership put you in charge of
doing this. What are your thoughts on that.
Speaker 4 (26:36):
I believe that they want to do something where the
Republicans Democrats work together. And I come at this from
a from a having previous experience where transportation policy was
was generally kind of the mostly the least partisan, most
bipartisan effort that legislators did. I believe that they that
(26:57):
they actually they want our involved. Now, at the end
of the day, the work that gets done, you know,
it'll be the proof will be in the pudding. If
if all the work that's done, and I expect Democrats
are going to have have ideas too about how to
find efficiency at the department at the department. But if
(27:18):
at the end of the day, if nothing, if nothing
happens with the information that that comes about for the
work that we do, then we'll know. And and there's
no there's no guarantee that Republicans are going to vote
to raise taxes just because you know, the leadership said, hey,
go try to find some savings, and especially if the
(27:39):
work that we do is basically is rejected by the majority.
So you know, I'm I'm optimistic, but that's just my nature.
You know. We'll see ultimately what what happens on this
whole thing.
Speaker 1 (27:52):
We'll see anything either of you would.
Speaker 4 (27:54):
Like to add, I would just say that the key
here is core mission. If if ODA is truly in
a crisis, and I believe based on everything that they've
said that that it is there's serious challenges here, then
it's when that's when you prioritize how you spend scarce
(28:17):
taxpayer dollars. And you know, I would I would encourage
you to look at the the kinds of laws that
have been passed, the mandates that the Department of Transportation
have been given over the last decade, and see if
all of those mandates And this just goes to the
(28:38):
point that Chllie rays earlier, are are really about core mission?
Are they things that you know, in a perfect world,
if we live in a utopia, would be nice to do.
But they're really not about making sure that we can
put asphalt on the ground, concrete on the ground, you know,
make sure that that freight and people and plate can
get where they need to go. So for for us,
(28:59):
it's really about core and prioritizing how the Department's spending
our tech spayer dollars.
Speaker 3 (29:05):
And I'll add to that, Brad, we know that cost
of living is top of mind when you talk to
Orgonians across the state. We know that that's important, and
so as Senator Starr and I move forward, that's top
of mind for us as well. Is understanding that this
is an expensive place to live, and that will definitely
(29:26):
be top of mind for us as we move through
this process.
Speaker 1 (29:30):
Thanks for joining us on Local Voices that state Senator
Bruce Starr and Representative Shelley Bosshard Davis. They've been assigned
the job of reviewing ODOUT operations and spending to keep
the agency accountable at a time when it's budget or
exceeds it's revenue. Thanks for listening to Local Voices. I'm
brad Ford. You can hear past episodes on the iHeartRadio
(29:51):
app under the podcast tab. Local Voices is a public
affairs presentation from iHeartRadio.
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