February 13, 2024 • 12 mins
Host, Kevin Jess, talks about Rare Disease Day which is just around the corner
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Episode Transcript
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(00:16):
It's time to speak up, It'stime to speak out. Welcome to We
have a Voice community discussions about Huntington'sDisease and juvenile Huntington's Disease. Show host
James Valvano, you are loved.Broadcasting from Nova Scotia, Canada via Speaker,
(00:40):
YouTube, Spotify and many other networks. This is we have a Voice
radio. My name is Kevin Jess. I'll be your host today. Let's
just have a short show monologue.I don't have a guest today, but
I wanted to talk about a RareDisease Day which is coming up in a
(01:03):
couple of weeks. Normally it's onFebruary twenty eighth every year. However,
this year special, it is aleap year, so a Rare Disease Day
is February twenty ninth. So I'msure that for those of you who who
know about that, you might havesomething planned for it. It's I mean,
(01:29):
it's the rarest of the calendar datesFebruary twenty ninth, So it underscores
the nature of rare diseases and itfocuses public attention on rare diseases as a
public health concern. It's something thateveryone should be concerned about the cost of
(01:49):
rare diseases is well, it's enormousand it's in the billions and billions of
dollars every year. And I'm notsure about the cost of Huntington's disease alone,
but I'm sure that it is significant. And you know, we require
investment so that investment may pay offin later years. So that's something to
(02:17):
keep in mind. What are youplanning on doing for Rare Disease Day?
You know, to bring about awarenessor I don't know, fundraising, you
know, just talking to people whatever. I mean, it's it's your day,
(02:38):
it should be everybody's day. Butsomebody has to set an example,
I guess, and it usually fallson victims or patients or family and their
families or caregivers. That's who itnormally falls on. You know, it
is a huge weight for everyone tobe constantly reminded did to both these days
(03:00):
and and you know, and I'msure some people are frustrated with disappointments and
and so on, but we haveto look forward. We have to,
you know, you can't. Youcan't remain in the past. You have
to move forward and find a wayto help our loved ones and or ourselves
(03:23):
if that's the case. And sofor me, I think that for those
of you that know, I doa lot of writing for the community,
and so that's what I'm going tofocus on, is, you know,
finding under reported items that would beof interest to the HD community and focus
(03:53):
on those items that how that itmay be helpful in finding a cure for
Huntington's disease. And I like,look, I tend to focus on that.
I do. I'm tired of theoh, well this might do this,
(04:13):
and this might do that. Iyou know, we want a cure.
That's what we want, and youknow we're getting I think that most
of us are getting tired of thepussy footing around and we just really want
people to focus in that direction.You know. I know that people feel
like they should be grateful and whateverfor some little pill that that might do
(04:41):
something to relieve some symptom. Look, I get that that you know,
those things, Yes, they're important, but I don't think that we should
be distracted by these things, becausewhat we really want is a cure.
And speaking of writing, you cango and you can see articles on www
(05:09):
dot HD pulse dot org and thatwill take you to that website where there's
articles of interest for everyone. Forinstance, Unlearned is a company out of
(05:30):
San Francisco. They are an AIcompany and they recently raised fifty to create
an artificial intelligence to help them orto help companies they say, pharmaceutical companies
(05:55):
or researchers or whatever to develop newtherapies. And so that's it's in a
very important article. And another oneis let me see here. A goal
is a pill to treat Huntington's disease, and it's a small lab. That's
(06:17):
they have an ambitious project to developa groundbreaking medicine for Huntington's disease. I
believe that they're out of Norway.Don't quote me on that, but I
think that they're out of Norway.But that article is there to tell you
where they're from. And so on. There's also a breakthrough an understanding Huntington's
(06:38):
disease. Most study sheds light ongenetic factors. So that was published.
It was a study that was publishedin December of twenty twenty three. And
then there's an article here from JamesBelvano which it's time changed the Huntington's disease
diagnostic criteria, which you know,is taking shape. That's something that's most
(06:59):
likely going to happen, which wouldbe probly the most significant step for the
HD community since the discovery of thegene in nineteen ninety three. And also
another article of groundbreaking research at SickKids that's Toronto Hospital. It offers new
(07:20):
hope for treating neurodegenerator diseases. There'san article about a taxia and I don't
know if I'm pronouncing that right.It could be at asia, but it's
ataxia. If you don't know whatthat is, you can go to www
dot hd pulse dot org and checkit out. There's many other articles here
(07:42):
that you may find quite interesting,including articles about your diet and just well
different articles on studies and the thingsthat are going on in the HD community
that you may not don't necessarily knowabout. In the I'm saying the scientific
(08:03):
community, I should say for theHD community. So people are working hard
and they're trying to find something tooto benefit people. Huntington's disease is complex,
as complex as each person that becomesa victim of it, and so
(08:31):
this is going to take some bigbrains to deal with. And you know,
I think that yes, while whilewe should remain optimistic, sometimes that's
unrealistic, and that there's nothing wrongwith feeling frustrated or forgotten. Sometimes that's
(09:01):
the way it feels. But Iknow that that we're the HD community is
not forgotten. You know. Ilook at things like markets and I see
how they predict market growth. Andone of the things that I get from
(09:24):
from alerts is how in the billionsand billions of of that that market for
you know, pharmaceutical companies and soon, for how much money they're going
to make. Okay, I knowyou want to roll your eyes at that,
but that's the way the world works, and you know it's around money.
(09:50):
So maybe that's a good thing thatthey're projecting all this growth for Huntington's
disease and of course neurodegenerive diseases asa whole. The I guess the rare
disease and then especially neur and nerdner degenerative diseases is lucrative. So hopefully
(10:16):
hopefully something comes up soon. Bevery cautious when people are predicting that,
you know it's going to be nextyear that some drug is going to be
available and and uh, but youhave to really look at what it takes
for each phase of a trial,and just because something's going into phase three
(10:41):
trials doesn't mean that as soon asthat trial is done that suddenly there's going
to be this pill or shot orwhatever. That's not how that works.
And you know, then things haveto go to the to the FDA.
But before that's the data has tobe all analyzed and then documented and then
(11:07):
put into a proposal for the FDA. Then there's production and so on and
so forth. It has to showa significant improvement and people so that they're
not taking some drug for something thatthey're not even going to notice. And
you know, there's a lot intothis that like that us lay people.
(11:28):
You know, we you know,we're not scientists, so you know,
we don't really know all of thedetails of how things get passed through.
So be patient, right, Justknow that it's it's not going to be
right away. That when something doescome, it's you know, we're looking
(11:50):
at a little ways down the road. I'm hoping that all of a sudden
there's some realization and that there's whereit is we found it is that realistic,
No, but we can always hope. But in the meantime, when
(12:13):
you're feeling down and you're feeling alone, may be forgotten. Just no,
that's not the case, and thatfrom those here we have a face.
You are loved.
It's time to speak up, It'stime to speak out. Welcome to We
have a Voice community discussions about Huntington'sDisease and juvenile Huntington's Disease. Show host
James Valvano, you are loved.Broadcasting from Nova Scotia, Canada via Speaker,
(00:40):
YouTube, Spotify and many other networks. This is we have a Voice
radio. My name is Kevin Jess. I'll be your host today. Let's
just have a short show monologue.I don't have a guest today, but
I wanted to talk about a RareDisease Day which is coming up in a
(01:03):
couple of weeks. Normally it's onFebruary twenty eighth every year. However,
this year special, it is aleap year, so a Rare Disease Day
is February twenty ninth. So I'msure that for those of you who who
know about that, you might havesomething planned for it. It's I mean,
(01:29):
it's the rarest of the calendar datesFebruary twenty ninth, So it underscores
the nature of rare diseases and itfocuses public attention on rare diseases as a
public health concern. It's something thateveryone should be concerned about the cost of
(01:49):
rare diseases is well, it's enormousand it's in the billions and billions of
dollars every year. And I'm notsure about the cost of Huntington's disease alone,
but I'm sure that it is significant. And you know, we require
investment so that investment may pay offin later years. So that's something to
(02:17):
keep in mind. What are youplanning on doing for Rare Disease Day?
You know, to bring about awarenessor I don't know, fundraising, you
know, just talking to people whatever. I mean, it's it's your day,
(02:38):
it should be everybody's day. Butsomebody has to set an example,
I guess, and it usually fallson victims or patients or family and their
families or caregivers. That's who itnormally falls on. You know, it
is a huge weight for everyone tobe constantly reminded did to both these days
(03:00):
and and you know, and I'msure some people are frustrated with disappointments and
and so on, but we haveto look forward. We have to,
you know, you can't. Youcan't remain in the past. You have
to move forward and find a wayto help our loved ones and or ourselves
(03:23):
if that's the case. And sofor me, I think that for those
of you that know, I doa lot of writing for the community,
and so that's what I'm going tofocus on, is, you know,
finding under reported items that would beof interest to the HD community and focus
(03:53):
on those items that how that itmay be helpful in finding a cure for
Huntington's disease. And I like,look, I tend to focus on that.
I do. I'm tired of theoh, well this might do this,
(04:13):
and this might do that. Iyou know, we want a cure.
That's what we want, and youknow we're getting I think that most
of us are getting tired of thepussy footing around and we just really want
people to focus in that direction.You know. I know that people feel
like they should be grateful and whateverfor some little pill that that might do
(04:41):
something to relieve some symptom. Look, I get that that you know,
those things, Yes, they're important, but I don't think that we should
be distracted by these things, becausewhat we really want is a cure.
And speaking of writing, you cango and you can see articles on www
(05:09):
dot HD pulse dot org and thatwill take you to that website where there's
articles of interest for everyone. Forinstance, Unlearned is a company out of
(05:30):
San Francisco. They are an AIcompany and they recently raised fifty to create
an artificial intelligence to help them orto help companies they say, pharmaceutical companies
(05:55):
or researchers or whatever to develop newtherapies. And so that's it's in a
very important article. And another oneis let me see here. A goal
is a pill to treat Huntington's disease, and it's a small lab. That's
(06:17):
they have an ambitious project to developa groundbreaking medicine for Huntington's disease. I
believe that they're out of Norway.Don't quote me on that, but I
think that they're out of Norway.But that article is there to tell you
where they're from. And so on. There's also a breakthrough an understanding Huntington's
(06:38):
disease. Most study sheds light ongenetic factors. So that was published.
It was a study that was publishedin December of twenty twenty three. And
then there's an article here from JamesBelvano which it's time changed the Huntington's disease
diagnostic criteria, which you know,is taking shape. That's something that's most
(06:59):
likely going to happen, which wouldbe probly the most significant step for the
HD community since the discovery of thegene in nineteen ninety three. And also
another article of groundbreaking research at SickKids that's Toronto Hospital. It offers new
(07:20):
hope for treating neurodegenerator diseases. There'san article about a taxia and I don't
know if I'm pronouncing that right.It could be at asia, but it's
ataxia. If you don't know whatthat is, you can go to www
dot hd pulse dot org and checkit out. There's many other articles here
(07:42):
that you may find quite interesting,including articles about your diet and just well
different articles on studies and the thingsthat are going on in the HD community
that you may not don't necessarily knowabout. In the I'm saying the scientific
(08:03):
community, I should say for theHD community. So people are working hard
and they're trying to find something tooto benefit people. Huntington's disease is complex,
as complex as each person that becomesa victim of it, and so
(08:31):
this is going to take some bigbrains to deal with. And you know,
I think that yes, while whilewe should remain optimistic, sometimes that's
unrealistic, and that there's nothing wrongwith feeling frustrated or forgotten. Sometimes that's
(09:01):
the way it feels. But Iknow that that we're the HD community is
not forgotten. You know. Ilook at things like markets and I see
how they predict market growth. Andone of the things that I get from
(09:24):
from alerts is how in the billionsand billions of of that that market for
you know, pharmaceutical companies and soon, for how much money they're going
to make. Okay, I knowyou want to roll your eyes at that,
but that's the way the world works, and you know it's around money.
(09:50):
So maybe that's a good thing thatthey're projecting all this growth for Huntington's
disease and of course neurodegenerive diseases asa whole. The I guess the rare
disease and then especially neur and nerdner degenerative diseases is lucrative. So hopefully
(10:16):
hopefully something comes up soon. Bevery cautious when people are predicting that,
you know it's going to be nextyear that some drug is going to be
available and and uh, but youhave to really look at what it takes
for each phase of a trial,and just because something's going into phase three
(10:41):
trials doesn't mean that as soon asthat trial is done that suddenly there's going
to be this pill or shot orwhatever. That's not how that works.
And you know, then things haveto go to the to the FDA.
But before that's the data has tobe all analyzed and then documented and then
(11:07):
put into a proposal for the FDA. Then there's production and so on and
so forth. It has to showa significant improvement and people so that they're
not taking some drug for something thatthey're not even going to notice. And
you know, there's a lot intothis that like that us lay people.
(11:28):
You know, we you know,we're not scientists, so you know,
we don't really know all of thedetails of how things get passed through.
So be patient, right, Justknow that it's it's not going to be
right away. That when something doescome, it's you know, we're looking
(11:50):
at a little ways down the road. I'm hoping that all of a sudden
there's some realization and that there's whereit is we found it is that realistic,
No, but we can always hope. But in the meantime, when
(12:13):
you're feeling down and you're feeling alone, may be forgotten. Just no,
that's not the case, and thatfrom those here we have a face.
You are loved.
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