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ATN News Bangla TV Live News Bangla,1 March 2018,(Bangla Sangbad Online)Bangladesh News,Bd Live News - Duration: 9:47.
ATN News Bangla TV Live News Bangla,1 March 2018,(Bangla Sangbad Online)Bangladesh News,Bd Live News
ATN News Bangla TV Live News Bangla,1 March 2018,(Bangla Sangbad Online)Bangladesh News,Bd Live News
ATN News Bangla TV Live News Bangla,1 March 2018,(Bangla Sangbad Online)Bangladesh News,Bd Live News
But it wasn't until the 1960s that there were strong Supreme Court judgments on
freedom of speech and the first major ones came out of the civil rights
movement. And that's not unusual. In the first major Supreme Court
statement affirming freedom of speech was in 1964 it was Times V Sullivan
if you want to look it up. What happened was that the New York Times published an
ad by the civil rights movement, Martin Luther King, which condemned
a state of Alabama sheriff. A parciularly brutal racist sheriff.
Who was doing all kinds of horrible things and they ran an ad condemning him.
State of Alabama sued the New York Times for what's called seditious libel.
Practically every country in the world, I suspect Holland too, I haven't checked,
has a principle of seditious libel.
Seditious libel means you cannot assault the state with words.
And truth is no defense. Truth makes it a worse crime
because then it's even a greater assault.
As far as I know, every country I've looked that still has that law.
Britain, Canada, you know, you can check here.
And that's like a core attack on freedom of speech.
It means the state, you know, the king or the state, whatever it is,
cannot be attacked with words, you know? Well that was--
The United States had it too. It was shot down by the Supreme Court in 1964.
So you can assault the State with words.
You can criticize the state freely and that means any
state authority. And there were other cases and finally in 1969 there was
the most important case which said that-- essentially, it concluded that speech should
be free up to participation in eminent criminal activity.
So, for example, if you and I go into a store and you have a gun.
And we're planning to rob it and I say: "Shoot!"
That's not protected speech but anything kind of up to that should be
protected speech and this is very relevant to the case that you mentioned
because the case in question was the Ku Klux Klan.
A vicious, racist organization carrying out lynching of blacks and so on and they
were the ones who were protected by this; that their speech should be protected up
to participation in imminent criminal acts. As far as I know that's
the most strongest protection of freedom of speech that exists anywhere.
Actually, it's even beyond what the courts are now willing to accept.
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Hope Hicks to resign: President Trump losing trusted adviser - Duration: 5:50.
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Trump talks gun control with bipartisan group of lawmakers - Duration: 7:56.
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grwm - Q&A about wearing MAKEUP, BULLYING, + more (Japanese CC subtitles) | VERTICAL Portrait VIDEO - Duration: 20:23.
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BHAAGAMATHIE - WikiVidi Documentary - Duration: 7:02.
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Reseña a Here's the Plan - Este es el Plan de Fernanda Frick - cortometraje de animación 2017 Chile - Duration: 2:25.
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Petcube Bites Pet Camera Review
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www.veganbatgirl.com
so I don't know the security or whatever I'm not sure what they're talking about
but the sign or the Batman light is above their head the two cops are parked right
here. WATCHING ME. they haven't talked to me at I'd like to get it on camera they are
sitting up there I don't really know what they want to say about it they as
you know it's not vandalism so and I've been peaceful and I haven't been you
know the performance whatever it was already let out people already left and
people stopped and talked so there wasn't any issue they're so curious to
what they'll say I don't mean the part for you while we're waiting on the cops
but I was hoping there was a group of people over there I was hoping to talk
to you but anyways before I got a camera if you watched this before gotten camera
there was actually quite a few interactions to vegetarians who are
challenging stuff to go vegan three different couples one of which had
health issues and so I'm just gonna recap that I will go back live I think
as I see what the cop situation is actually I'm
gonna be shutting down in like 30 minutes anyways so like sometimes
dealing with those conversations silly but the cops are here and I'm in Tulsa I
am in the downtown part on by the City Hall you can see the City Hall there and
cars kind of multiple directions and this popular blue dome districts where a
bunch of bars are and then again cops are here so I'm going to close out we'll
turn it back on in a little bit if the cops come okay
see you later bye
www.veganbatgirl.com
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Tintype is a photograph, an early type of photography from the 19th century,
that's exposed onto a piece of metal.
We know this soldier's name because it was in the file of a Willis Calhoun of the
67th United States Colored Troops, 67th USCT.
Most of the Civil War pension files are here at the National Archives in Washington, DC.
People come in everyday to review Civil War soldiers' pension files and service records,
as well.
When researchers at the National Archives come across tintypes mixed in with paper records,
they alert Conservation and we do a quick condition check to make sure that the photograph
is stable.
It's then removed from the holdings, scanned by our imaging department, and then
we store it separately in a vault.
This tintype is in very good condition.
You can see some of the emulsion has been disrupted and that the piece of metal
is not entirely flat.
It was really powerful to see the original photo of a person who served in the
Civil War, who fought to end slavery, who fought to preserve the Union.
So it was really powerful to connect to this person who lived long ago, died long ago,
and to see that a real person existed that's in this photo.
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Celebration of a new era - Duration: 44:32.
It was around ten years ago when for the first time I heard of new medicines that were developed...
that were truly different than any other medicine before for CF.
Back then I was still doing relatively really well, my health was really good and back then...
it was not more than just hope that such medicines would come to me or any other CF patients.
Five years later, the first of such medicine was approved for a very small group of patients...
and it was a wonder drug. A drug that changed the life of patients from one second to the other.
In the same year in 2012, I started a new antibiotic.
An antibiotic which was the same which I always used for years but there was one difference.
The difference was that it went from 20 minutes treatment time to just 2 minutes of treatment time.
Simply because the nebulizer changed to a powder form. For me that was an eye opening to research...
more in new technology because I knew from then on I could expect some great things coming up.
In the same year also a new biotechnology company was started - ProQR Therapeutics - where...
I started working a year later. Since then I am in the middle of the heart of CF research.
And now, 5 years later...I am standing here in front of you, you came with a big group of people...
Thank you very much.
Standing in front of you and I can say that I started a new era of medicines...and this is just the beginning.
I would like to welcome you all for tonight. Thank you very much.
It's a very special occasion for me.
You came here from many different groups.
People from all over from England, Italy, here in the Netherlands, family and online.
I would like to give a special welcome to the people who are watching online.
I think it's a unique moment to cherish right now, it's all about now.
And therefore I want to make sure that as many people at home can follow along and celebrating this together.
I would like to welcome my Oma's.
Oma, geweldig dat u er bent. Ik weet ook dat de andere oma nu ook mee kijkt.
Ik denk ook aan mijn opa's. Ik weet zeker dat zij dit ook geweldig hadden gevonden.
Last but not least, I would like to welcome those came from abroad.
They took a plane today coming specially for me. Laura, Hanna, Alexander. Thank you for very much.
I appreciate it a lot.
Tonight I would like to give you an overview of me and CF.
How CF has treated my life so far and also explain what medicines are coming up in the...
upcoming years. And those are a lot.
I also of course I will share my experiences on Orkambi.
Please remember that Orkambi is the occasion I used to celebrate this and not the reason...
why I am celebrating tonight. Because this celebration goes much broader than just starting a new medicine.
I prepared a presentation for now. I am going to speak but feel free to listen to me or watch the screen.
Cystic Fibrosis.
Just a little overview what is Cystic Fibrosis.
It's a genetic disease.
It is one of the most common orphan diseases out there.
Around 70,000 patients world wide have it.
The most orphan disease.
In the Netherlands there are around 1,500 patients.
In the United States around 33,000.
Just to give you a comparison.
It's a multi organ disease.
It affects many organs of you.
Primarily the lungs but also the pancreas, sinuses, liver and bones.
Simply because thick mucous present everywhere downgrades your body.
There are many mutations that cause the exact same disease but the most common one, 50%
of the patients have it worldwide including myself.
Today median survival age around 40.
When I was born in 1990, my doctors told my parents that I would not get any older than
18 and now I am standing here in front of you, 27 years old and doing great as ever
and sill going strong.
But I am lucky compared to other patients who are in a much worse situation and also
compared to my grand nephew, Marco, who is 2 years older than me, and had double lung
transplant 3 years ago.
So this gives a comparison how bad the situation can be.
Now going a little bit technical just to give you an idea what cystic fibrosis is and that
gives a better understanding of presentation later.
It's all about missing a certain protein.
The CFTR protein.
The Cystic Fibrosis Trans-membrane receptor.
This protein is present in any organ that comes in touch with air.
So also your skin.
In a normal healthy person there is a normal flow of water and sodium and chloride.
But someone with CF, there is a chloride channel missing as a result you get a thick layer
of mucous simply because there is a dehydration going on and as a result the mucous layer
isn't able to flow.
We all have mucous but for me it is just thicker than for others.
We have mucous to fight all the particles which we breathe in every single second to
fight any bacteria or virusses.
But for me bad particles is a catalyser to get an infection.
So.
A little bit more about me and CF.
I was diagnosed when I was 3 months after birth.
Of course I don't remember it all but for my parents and family it was a big, what should
I say, shock.
But my parents were great and made sure they took really good care of me, making sure that
I would have a normal youth as much as possible.
And so I did.
I had an extreme healthy childhood.
Absolutely extremely.
I barely noticed anything until I was around 14/15.
I remember in France, I remember a few things of CF.
Not much.
Simply because I didn't get in touch a lot with it.
I remember I had to take my nebulization machine every day.
It was a huge machine.
I remember I had to go to the hospital but the results were the same all the time so
I could move on.
And I remember my mom or my dad treating me every morning and evening, batting on my lungs
to get the thick mucous out of lungs.
Physiotherapy.
But maybe what I remember most is actually the experience I have had in Paris.
One time we went to Paris, to Disney land Paris, and I had to do my nebulization treatment
and the machine exploded.
Literally.
So the result was that the whole hotel had a power cut.
That is what I remember of CF in France.
It was good fun.
When I lived in England similar things happened.
Nothing much.
I every now and then I went to the hospital and I started taking oral antibiotics for
the first time on a regular basis just to make sure I wouldn't get sick.
For those of you that are here, Dries and Merel, you probably havn't seen much of me
and CF.
At school I was doing really fine, like all the others.
But Dries, probably does remember I had to the nebulization treatment every now and then
and that I coughed every now and then.
Nothing much more.
Then I moved to Italy.
Things were going the exact same way.
There was one difference though.
I went to an Italian hospital.
And Italian hospital is an experience on its own.
Let alone it was a hospital of the Vatican city.
Meaning it was a Catholic hospital.
And firs hospitalisation was in 2004.
It was not so much that I was very sick but more a preventive cure to prevent worse.
And it was one to never forget.
Seriously.
Not so much because it was the first time.
Not so much because it was a little uncertain what was going to happen next.
More because of the second day I was in the hospital.
There was an issue at the department next to me.
There was a virus infection going on so the chapel which was next door was not going to
be used.
So they decided without my permission but just by doing it, to do the Sunday mass in
my room.
So the nurse came to our room and said 'listen you have the biggest room in the near area
so we will do the sunday mass in your room, together with your roommate.'
So my dad and I together with 15-20 other people we had an entire mass.
Welcome to Italy.
Scusa Laura, ma..e cosi.
Laura: "It's the Vatican, it's not Italy.'
-Aaaaaa, vero.
Bava brava, hai capito bene.
I had my first real infection in 2006.
There I had a severe lung infection.
Again it was in an Italian hospital.
I moved to a new department, new building so that on its own was an experience.
The room wasn't finished yet and there was big chaos.
Like always.
But it was a serious infection.
Since then I slowly slowly developed more and more mucous.
But, it was still relative.
For those of you, the Italians that are watching, at school I every now and then went to the
hospital a few weeks.
I had get some antibiotics.
I coughed a bit more.
But in the end my IB diploma and American High school diploma like all the others without
any delay so that was a big achievement as well.
Then I moved to the Netherlands and things went smooth.
They continued to go smooth.
First few years were very stable.
Much more stable than in Italy.
Which was surprising actually.
In May of 2012 I had an infection.
A lung infection where I went to the hospital.
That month, it was May of 2012 was an eye opener for me.
In that month I started a new antibiotic which was a powder form.
An inhalation form.
Treatment time went from 30 minutes to 2 minutes a day.
And so that made me interested to read about the technology of CF.
Just a year later I went to work at ProQR.
But before that, I had a dream to go abroad to the United States for an exchange.
That was first delayed but at the end I was able to go without any problems and I had
an amazing time over there.
There in the US I learned more about CF.
I got into touch with the CF Foundation and I came to realise that here in The Netherlands
we have a really good healthcare system.
All the medicines, or most of them, are covered and there in the US, CF patients fighting
with their insurance companies to get their medicines or sometimes they don't get access
at all to the simple medicines out there.
So that was a realisation that here in the Netherlands we have it really really good.
When I came back I all of a sudden got this call from my recruitment agency because there
was this company in Leiden which was looking for someone with Cystic Fibrosis.
Are you interested to maybe have a chat?
And so I did and within no time I was hired there and the rest was history because I still
work there one day a week and it is a unique experience to be so close to the research
of CF drugs.
These were the medicines which I took to the States for half a year.
It was actually a lot of administration needed.
Also because a Dutch guy, a Dutch young guy travelling to the United States with white
powders and liquids in your hand luggage, you simply ask for problems.
But I was well prepared it worked out well.
Until then I was doing relatively doing well.
A lot of people here are from badminton.
They know me from badminton.
And they have seen that I can play badminton like all the others without any problems.
Sometimes I coughed a bit more than the other days.
But in the end I could play competition, I could
play the games like any other.
I also had a lot of fun during the third half.
Drinks afterwards and that went without any issues at all.
And then also followed my master's degree.
My first year of my masters degree, also that went really well without any major issues.
But since then things started to change a little bit.
I got the chronic pseudomonas infection.
It's a bacteria, a severe bacteria.
It's unique I got it so late.
Usually you get it much younger and as a result you get much more sick.
But that for me was a moment where I had to make more antibiotics due to infections with
more mucous.
Last year was my worse year ever.
I had a severe pneumonia infection in the beginning of the year.
And in the second half I had another hospitalisation unfortunately.
Simply because of the pseudomonas coming back.
So in the total I had 12 cf-related hospitalisations in my life.
That may sound a lot but that still is relatively low.
Just one more thing about me'nd cf.
To compare my lung function.
Because I hate comparing me to other cf patients.
CF is a very complex unique disease.
It is different for everyone else.
But clinically you have to put measurements around it and that is the lung function.
This graph shows median lung function over the years.
And what I tell you right now, is that if you are 27 years old, the median lung function
is around 65%.
This means that 50% of the patients have a lung function of around 65% or lower.
Which means that they have lost 40 to 45% of their lung function.
This slowly means you get quicker out of breath.
Infections.
Not being able to do sports as much and all that.
Just to compare, in November of last year, I was off this chart.
My lung function was 110% which is truly unique.
There are not many people.
There are not many people that can achieve that.
My doctor reminds me every time, also to myself, I am very happy to have such a lung function.
Even though I have a lot of other issues and complaints, this is still something to be
very proud of.
I want to give a little overview of the medicines that exist so far for CF because this is very
important to understand what the current medicines which just came out are different than any
other medicine before.
What I just explained in the image is that people with CF have a thicker mucous and as
a result you have more mucous in your lungs.
You get lung obstruction.
Your lungs are filled up with mucous instead of air, therefore you can breathe less.
You are quicker out of breath and you have less energy.
This is the perfect environment for bacteria to grow in for infection.
Bacteria love thick mucous.
It is relatively wet and warm so you can get an infection.
With in infection you get tissue damage.
Your tissues become red and thicker and so your lung airways become smaller and you get
out of breath.
Of course your human body won't be your human body if it wouldn't react so as a result your
body reacts in trying to fight this infection.
How does it do that?
By creating mucous.
By killing the bacteria it creates mucous so that they can get out of your lungs.
But people with CF already have thick mucous due to the defect.
So as a result you end up in this vicious circle where you go from thick mucous to more
thick mucous to more thick mucous.
And over time this results in respiratory failure, lung damage, lung failure and so
forth.
This is a complex process simplified.
It's a short term process but it is also a long term process.
In the short term you get an infection and in the long term you get lung decline.
To compare, healthy people who get a lung infection or a flu or a cold go through the
same circle, exact same thing.
But the only difference is that they get out of it, while for CF patients it's a catalyst
to get more sick.
So for each of these steps there are many different types of medicines.
I am not going over all of them.
There mucous thinners, mucous enzymes that try to cut the mucous, mucous clearance techniques.
So with physiotherapy, chest physiotherapy, physiotherapist, sports, to try to remove
the mucous as much as possible from your body.
Antibiotics which try to treat the infection and the anti inflammation medicines reduce
the inflammations.
Over time if these medicines don't work anymore you slowly move towards a lung transplant.
But that's a long process and much more complex.
So on a daily basis, I take around 20-25 medicines a day, if not more.
Treatments in the morning, afternoon and evening.
That's been my whole life and still will be for the upcoming years.
Okay, but now comes the crux of this whole story.
These medicines treat the symptoms of CF.
They try to reduce the mucous.
They try to remove the mucous and try to remove the infection so that less thick mucous is
present in your body.
But in past 5 years, things changed so much.
Because medicines are developed that treat the underlying cause of the disease, making
sure no thick mucous will be developed, so that this defect repaired and as a result
no more thick mucous is developed at all.
Over time you hope to achieve a result where the vicious circle is stopped or reduced so
that you take less additional medicines.
5 years ago, Kalydeco was approved for a very small group of patients and Orkambi was approved
3 years later in the US.
Orkambi is also the medicine which I start taking in November.
These medicines have changed the world for many CF patients already.
You can't imagine.
I can't tell on behalf of them.
They have to tell that themselves but if you hear the stories, if you read the stories
and much of an impact these medicines are.
It's truly amazing.
From not able to walk, not able to do anything to just having a life again.
Able to work, thinking of getting a family.
Thinking of doing fun tings because you can breathe again.
We breathe every single second, every single day.
If that's an issue than that has a big impact on your life.
And if that simple thing can change the life, than that's truly amazing and a miracle.
Kalydeco is truly a wonder drug.
It's absolutely a wonder drug.
Surreal what that medicine has done.
Scientists and everyone is amazed about this medicine.
Orkambi is less.
It's more suspicious and there are more side effects but also that medicine has changed
the life of many.
Yesterday, or actually last week, I talked to patient who was in a wheelchair.
Was not able to breath or walk anymore to ice skating 100 km in just one year.
That is how impactful this medicine can be.
Okay, so a little controversial here.
Costs of medicines.
I think that is very important to mention.
How expensive are these medicines?
Unless if I told you any of you already in person, does anyone have any idea how much
the costs are on a yearly basis for the regular treatments which I just explained to you right
now.
Any idea?
A small house?
In the Netherlands btw.
So if you just look at the medicines.
If you just look at the medicines we are talking about €50,000 a year.
If you include the regular hospital check-ups which are 4-5 a year you can add another €5,500
- €6000.
If you have an hospitalisation and you count 2 per year.
It's another €20,000.
So all in all, right now I am costing...well now a bit more....but before I started Orkambi,
I costed €80,000 including all these medicines.
Now, to put it in perspective.
Orkambi costs €180,000 a year.
More than double than what I already cost right so far.
So that put this whole costs in a complete different range.
Whether you agree with it or not, I am not going to discuss that tonight, but it does
put things in perspective how these medicines are.
And that just in the Netherlands.
In the US, I can tell you the costs are double.
At least, yes.
This excludes any vitamins, any additional medications, physiotherapy, all the nebulization
stuff and that is still quite a lot.
By the way, if anyone is interested to look up their own costs in the Netherlands go to
medicijnkosten.nl.
There you can look up any medicines.
By law they are required to say how much the costs are.
That is why you can see the exact prices.
That being said, Orkambi I have mentioned the market price not the real price because
there is a financial agreement which is secret, but the market value is still €180,000.
Now, to the interesting part.
CF research.
The pipeline of CF research.
Today there is so much CF research going on.
There are around 20 known modifying disease researches going on worldwide that threat
the underlying cause of the disease.
That's a lot.
Thinking it's an orphan disease, it is a lot of research.
It's all about repairing CFTR, that protein.
It's all about that.
Repairing that protein can be done in many stages of the CFTR development proces.
DNA, RNA and the protein.
You are standing in the kitchen, DNA are your ingredients, RNA is the recipe, and the protein
is the cooking part.
The meal you are making.
At all these levels, medicines are being developed to try the meal which you are making.
This amount of research has increased exponentially in the past 5 years on all these stages.
So I work at ProQR Therapeutics, there they develop RNA therapy trying to fix CFTR on
a RNA level.
But the most common, biggest group of companies are working trying to fix when the meal is
being made by the cook.
Trying to add some molecules in the last minute so that the CFTR protein is repaired.
That is a big group of research and very intresting to follow.
Vertex, is the company which developed Orkambi has already their follow-up medicine ready.
In fact, their follow up medicine of Orkambi which I am eligible for, will be approved
most likely on February 28th of this year.
In the second half of 2018 it will be approved in Europe and I expect it to be available
in The Netherlands around 1,5-2 years.
If that is not enough, they are already with a third generation medicine which is much
better.
The follow up medicine of Orkambi, the 2nd generation is more treating the side effects.
It is not necessarily better but has less side effects.
While the 3rd generation is much better.
The most interesting about this medicine is that it treats much more patients than just
the 50%.
Therefore over 90% of the patients are expected to have access to this medicine.
And then there are other companies which are doing similar things, trying different techniques
to treat the underlying cause of the disease.
Last year I was actually for a trial from Galapagos to participate.
I declined because of practical reasons but I definitely looking forward to this year
where new trials are coming up and I am sure I might be eligible for it, even though I
am on Orkambi right now.
And that is just the research trying to treat the underlying cause.
There are over 20 other clinical trials at the moment, CF-related, and are different
and try to reduce the infections, try to reduce the mucous and other type of research.
And also that is promising.
This is very technical.
But we all know that antibiotics is bad for us.
We all know that antibiotics creates resistance.
And so for CF patients it is crucial that new medicines are developed that fight the
symptoms so that infections can be treated better.
Most CF patients will become resistant to all antibiotics and then you just decline
very fast.
So in this area of research, also for me, it is very interesting to follow what Is going
to happen.
Then there is a very special category of medicines.
They are the personalised medicines.
Personalised medicines is a new technique where they try to look at each individual
patient to see if a certain drug or research drug will be working on you personally.
The Netherlands is actually leading in this.
UMC Utrecht, just right across my window where I live, they are developping new technology
where they take a sample of your gut and with that sample they are able to test if medicines
and predict if the medicines will react or not on you.
You can imagine that is very interesting because insurance companies are very interested to
see if a medicine will work or not and predict beforehand if such a medicine which firstly
was not researched for you can be applied to you.
And it is unique that in The Netherlands 3 Dutch insurance companies have invested in
this project to get this moving forward because the patients who suffer the most right now
are the patients that do not get access to such new medicines because they fall out of
these mutations.
They have a very rare mutation resulting in no hope that such medicines would ever come
to them.
But this is a solution for them because with this they might get medicines for them personally
to get it to work.
Every CF patient deserves disease modifying medicines like I do.
Everyone of them.
And that's why I decided....That's why I decided that the money which you donated to me tonight,
which I would like to thank you very much for, I am going to give it to a cf targeted
research project that does more research in trying to understand better how the CFTR works
in those very rare mutations so that get more hope for such medicines.
I think that's very important.
All CF patients diverse the exact same medicines so also those with a very rare mutation.
So, what about me and Orkambi?
Orkambi, the medicine which I started taking 2 months ago.
You have all read about it in my blog or you've heard it in person but I hope by now it's
clear that Orkambi is not the reason I'm celebrating here.
It's just the occasion.
Orkambi is just an additional reason why I am celebrating this with you all.
See, Orkambi and me is a personal special story on its own.
Yes it's a medicine which treats the underlying cause.
Yes, its's finally available in The Netherlands but for me it goes much further beyond than
November 1st when it was approved.
Because I work at ProQR Therapeutics I have a very unique insight on the development of
this medicine.
I know all the in's and out's of this medicine.
The pro's, the con's.
Side effects.
Should it be approved?
Should it be reimbursed?
Yes or no and so forth.
so in the office, during working hours and afterwards I had many technical discussions
and many other talks and things about this medicine.
Whether this will work but also from a business perspective how will it affect our research?
How will it affect ProQR development process?
So from a personal point of view, I was very excited that this medicine was finally approved
4 years ago but from a business and competitive perspective it was very interesting to this
would influence us.
Well , it took a long time before Orkambi was finally approved in the Netherlands.
It was approved in the United States in 2015, July 2015.
I remember the moment.
I was actually with my GiMA students, master students, we were sitting at the sea, sunset,
last night, it was a good night, right?
But you might not know that at that moment they approved the medicine.
For me that was also a wake up call 'wow, now it's truly very close.
I just finished my first year of my masters degree and there is a medicine nearly in my
hands.
Well I thought back then.
But the US patients it was.
That was truly a unique moment.
It took unfortunately another 2.5 years to approve here in The Netherlands.
Negotiations took way too long, but once it was approved, it went really fast.
It was approved on October 24th 2017 and just a week later it was available.
That's how fast it can go sometimes.
So I remember it was my last day of intravenous antibiotic cure I had back then in October.
it was my last day of intravenous antibiotics and on the same day Orkambi was approved in
the Netherlands just a week later.
It was such a double feeling, because I wasn't feeling well that day but I knew something
might be coming up which would change me once and forever.
And I never thought to start so quickly.
Because on October 31st, six days later I got a call from my doctor saying 'Listen Jelle,
Orkambi is approved, do you want to start?'
Yes I do.
-'ok,, come to the hospital on November 2nd.
We will do a baseline test and from then on you can start taking the medicine.'
My parents and I were so amazed how fast it went.
I couldn't believe it.
So I went to the hospital on November 2nd and that was a special day as well.
That day many CF patients came to the hospital and you could see from the employees there,
the doctors, nurses, and also for them it was a special day.
They felt this medicine could change patients a lot and even though they had to work hard
they were all happy and very excited for us.
So even for them it was a very special moment.
On November 6th, I got the medicine in my hands and I remember the truck driver had
a half million worth of Orkambi in his truck.
Even for him, he said, it's a special day for me because I am able to make people happy
and that is what I love this job.
Also for him it was a very special moment he said.
So I started taking Orkambi immediately.
I celebrated it with my parents and sister.
I wanted it to combine it with tonight but it went way too fast otherwise I would have
taken tonight my first dose just to show Orkambi is the not reason why I am celebrating but
just the occasion.
And then, and then.
It only took 3 tablets and 20 hours to feel the most wonderful experience I have ever
had.
3 tablets did the exact same thing as intravenous antibiotics would do in 2-3 weeks.
My thick mucous was gone.
Within 1 day.
It was truly wonderful.
When I woke up on Wednesday, on day 2, I did a deep breath in and I was like ' WOOOOOOW'.
This can't be true right?
It was such a wonderful experience.
And that week my voice changed, my nose changed, it went open.
I had a lot of energy.
It was a lot of euphoria but you could see, you could hear that things went really well.
I knew immediately this medicine is working for me.
For some patients a long time before they see a reaction and some patients they have
to stop quickly but for me knew this is working.
It's truly amazing.
Those experiences continued.
When I took my bike, it was another way of breathing.
When I played badminton it was another way of coughing up mucous at the end of the day.
While I am presenting here, my breathe is so relaxed.
I don't remember it has ever been so relaxed as ever before.
The amount of energy I had in the past 2 months is truly amazing.
I already do a lot on a daily basis.
Masters degree, work, this, that.
I couldn't believe that I could gain so much more energy simply because there is less thick
mucous in my lungs that try to be frighted against.
That on its own is amazing.
2 weeks after I took Orkambi, unfortunately my liver enzymes were too high which I maybe
had to stop.
It is a common side effect.
But luckily they went back down again.
In my 3rd week when it was uncertain if I was able to continue or not, a lot of people
asked me so are you worried about it?
And I said listen, I am experiencing such wonderful thing right now that I am not been
thinking about it too much.
And before I knew it was already over so it did not distract me a lot.
But it is true though, that the liver enzymes is still a thing to look after at and keep
in mind because it still might be a reason why I need to stop in the longer term.
CF is not over.
Definitely not.
But Orkambi did give me many new experiences.
And that is what counts the most.
Because I have to say, I have to be honest.
Unfortunately, I started new antibiotics this week.
It was quite unexpected.
It is quite unexpected but it was needed.
And that shows that CF is definitely not over.
But what I have experienced so far these 2 months is truly amazing and I will cherish
that forever.
And that is what is most important.
Believing in hope, having dreams but if those dreams come closer to you, experience those,
you have to cherish that as much as possible.
And that is the reason why I am with you all, including those that are online, to be part
of this experience.
I hope tonight that I have given you an idea on me and CF, what is coming ahead and what
Orkambi has done to me.
I know some of you are still studying or are working in biotech, pharmaceutical industry
and you have to remember that CF is just the first disease, one of them, but there are
more diseases to come where similar experiences will follow.
CF is just quite unique to be one of the first.
And that also motivates me to keep on studying and learning more about other diseases.
Because I have experienced how truly amazing one medicine can be, and so hope that so many
more patients will follow from now.
Thank you very much for your attention.
Cherishing the moments like today is what I do, that is how I live.
I think it is great that I am able to share this with you around the world with you all
and I truly hope that we can celebrate many moments to come.
Thank you very much.
Cheers.
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Styling and Makeup for Bikini Photoshoot | Fashion Photography Tutorial | Part 1 and 2 - Duration: 2:20.
Hi, This is Ryan.I am a photographer specialised in Fashion and Nude.
This is the second video of the Fashion and Nude Photography Tutorial Series.We have done
the first tutorial with this red bikini as styling and we learned about ISO, its relevance
and all.
So, we have model Sneha here.
I wore this Bikini and that colour is very nice.
That's great and I will try this one.
You can try this with this one.
So, as I was saying in first Tutorial.
These kind of Bikinis are like for example, it's a polka dot Bikini.
Either you can wear it without any accessories or any cover-ups or something like that.
But, in this tutorial as a change we will use this along with the bikini and I think
this also a Polka dot and that would be great.
We are doing Makeup for second tutorial.
You can see that she is wearing the polka dot bikini which we selected during the styling
and she is wearing the cover-up also.
And, if you have seen the first tutorial, this is the consecutive.
We are shooting consecutively.
The makeup and everything remains same, she is having the same red lipstick and we will
do some touch up for eyes, maybe blush or something like that.But, the main makeup remains
same.
She is having the red lipstick and red nail paint and pink eye shadow also remains same.
So, we are planning to do at least 3 tutorials today to give you an idea about ISO, Aperture
and Shutter speed.
First tutorial was about ISO.
In this tutorial we will give you an idea about Aperture.
I think this is all you need to know about Makeup.
Now, we will see the lighting.
For more infomation >> Sebastián Yatra - SUTRA-------------------------------------------
2/28/18 8:40 AM (Lakeland Fwy, Cleveland, OH, USA) - Duration: 5:24.
For more infomation >> 2/28/18 8:40 AM (Lakeland Fwy, Cleveland, OH, USA) - Duration: 5:24. -------------------------------------------
2/21/18 5:50 PM (Lakeland Fwy, Euclid, OH 44132, USA) - Duration: 5:01.
For more infomation >> 2/21/18 5:50 PM (Lakeland Fwy, Euclid, OH 44132, USA) - Duration: 5:01. -------------------------------------------
2/21/18 5:40 PM (Innerbelt Fwy, Cleveland, OH 44114, USA) - Duration: 5:02.
For more infomation >> 2/21/18 5:40 PM (Innerbelt Fwy, Cleveland, OH 44114, USA) - Duration: 5:02. -------------------------------------------
2/21/18 12:46 PM (Innerbelt Fwy, Cleveland, OH 44115, USA) - Duration: 5:21.
For more infomation >> 2/21/18 12:46 PM (Innerbelt Fwy, Cleveland, OH 44115, USA) - Duration: 5:21. -------------------------------------------
2/21/18 8:19 AM (Lakeland Fwy, Cleveland, OH, USA) - Duration: 5:08.
For more infomation >> 2/21/18 8:19 AM (Lakeland Fwy, Cleveland, OH, USA) - Duration: 5:08. -------------------------------------------
2/21/18 11:50 AM (Bessemer Ave, Cleveland, OH 44127, USA) - Duration: 5:24.
For more infomation >> 2/21/18 11:50 AM (Bessemer Ave, Cleveland, OH 44127, USA) - Duration: 5:24. -------------------------------------------
2/21/18 8:08 AM (Lakeland Fwy, Willowick, OH, USA) - Duration: 5:05.
For more infomation >> 2/21/18 8:08 AM (Lakeland Fwy, Willowick, OH, USA) - Duration: 5:05. -------------------------------------------
2/20/18 5:46 PM (Lakeland Fwy, Euclid, OH 44123, USA) - Duration: 5:01.
For more infomation >> 2/20/18 5:46 PM (Lakeland Fwy, Euclid, OH 44123, USA) - Duration: 5:01. -------------------------------------------
2/21/18 5:35 PM (Bessemer Ave, Cleveland, OH 44127, USA) - Duration: 4:59.
For more infomation >> 2/21/18 5:35 PM (Bessemer Ave, Cleveland, OH 44127, USA) - Duration: 4:59. -------------------------------------------
2/21/18 8:13 AM (Lakeland Fwy, Euclid, OH 44123, USA) - Duration: 5:09.
For more infomation >> 2/21/18 8:13 AM (Lakeland Fwy, Euclid, OH 44123, USA) - Duration: 5:09. -------------------------------------------
2/21/18 11:56 AM (Innerbelt Fwy, Cleveland, OH 44115, USA) - Duration: 5:20.
For more infomation >> 2/21/18 11:56 AM (Innerbelt Fwy, Cleveland, OH 44115, USA) - Duration: 5:20. -------------------------------------------
2/21/18 8:24 AM (Cleveland Memorial Shoreway, Bratenahl, OH 44108, USA) - Duration: 5:01.
For more infomation >> 2/21/18 8:24 AM (Cleveland Memorial Shoreway, Bratenahl, OH 44108, USA) - Duration: 5:01. -------------------------------------------
2/21/18 7:40 PM (38692 Mentor Ave, Kirtland, OH 44094, USA) - Duration: 5:18.
For more infomation >> 2/21/18 7:40 PM (38692 Mentor Ave, Kirtland, OH 44094, USA) - Duration: 5:18. -------------------------------------------
2/21/18 12:51 PM (6975-7225 Bessemer Ave, Cleveland, OH 44127, USA) - Duration: 5:03.
For more infomation >> 2/21/18 12:51 PM (6975-7225 Bessemer Ave, Cleveland, OH 44127, USA) - Duration: 5:03. -------------------------------------------
2/21/18 6:01 PM (31435-31445 Bayridge Blvd, Willowick, OH 44095, USA) - Duration: 2:41.
For more infomation >> 2/21/18 6:01 PM (31435-31445 Bayridge Blvd, Willowick, OH 44095, USA) - Duration: 2:41. -------------------------------------------
2/21/18 7:45 PM (7857-7861 OH-306, Mentor, OH 44060, USA) - Duration: 3:16.
For more infomation >> 2/21/18 7:45 PM (7857-7861 OH-306, Mentor, OH 44060, USA) - Duration: 3:16. -------------------------------------------
2/21/18 7:34 PM (35199 Vine St, Eastlake, OH 44095, USA) - Duration: 5:04.
For more infomation >> 2/21/18 7:34 PM (35199 Vine St, Eastlake, OH 44095, USA) - Duration: 5:04. -------------------------------------------
2/21/18 5:55 PM (Lakeland Fwy & OH-2, Wickliffe, OH 44092, USA) - Duration: 5:07.
For more infomation >> 2/21/18 5:55 PM (Lakeland Fwy & OH-2, Wickliffe, OH 44092, USA) - Duration: 5:07. -------------------------------------------
2/20/18 5:51 PM (30600-30634 Willowick Dr, Willowick, OH 44095, USA) - Duration: 5:07.
For more infomation >> 2/20/18 5:51 PM (30600-30634 Willowick Dr, Willowick, OH 44095, USA) - Duration: 5:07. -------------------------------------------
2/21/18 7:48 AM (34962-34998 Vine St, Eastlake, OH 44095, USA) - Duration: 5:17.
For more infomation >> 2/21/18 7:48 AM (34962-34998 Vine St, Eastlake, OH 44095, USA) - Duration: 5:17. -------------------------------------------
Stefan and I got married here in Germany 6 years ago and our experience buying a wedding
cake really surprised both of us.
Hey everyone, Dana here!
When Stefan and I got married in Germany we tried our best to mix together the American
and German wedding traditions, and one thing that we agreed upon as far as the American
wedding traditions went was having an American-style wedding cake with multiple tiers.
There weren't really too many things that I had always dreamed about having at my wedding
but a multiple tiered cake was one of them.
And Stefan agreed that it just kind of added to the whole wedding-feel.
And also, we just love cake, and with multiple tiers we could have a different flavor of
cake on each tier.
So a few months before the wedding we planned out a date to go cake shopping in Germany,
and wow, I was definitely surprised by how it all went down.
As I said, we went into the cake shopping experience knowing that we wanted multiple tiers
-- I was thinking at least three, but I knew that I would probably be able to be talked
into four by the right salesperson -- we wanted a different flavor for each tier; we wanted
the cake to be colorful; and I wanted it to be covered in buttercream rather than fondant.
So first of all let's talk about my expectations going into this cake shopping day.
How would it work in the U.S.?
In the U.S. you would probably make an appointment at a cake shop for a tasting, where you'd
go in and talk with someone who works there, try a few different flavors of cake, a few
different options of frosting; we would tell the person what we were thinking as far as
the wedding cake goes and the person at the bakery would tell us that it's our big special
day and that they would work with us to create the cake of our dreams.
Sometimes this experience could also come with the tendency to try to up-sell in the U.S.
As I said before, I was thinking about three tiers but I could have been talked into four.
I had a soft top limit of what I wanted to spend, and I call it soft because I knew that
if the person at the bakery had offered this and that and this and that to create my wedding
cake of my dreams, I could have been talked into spending a little bit more.
I would mention, for example, wanting the cake to be colorful, and they would gladly
help me spend my money to make that happen as beautifully as possible.
What I experienced in Germany was...well...definitely not that.
First of all the concept of cake tastings seemed to be completely non-existent.
We were told that we could buy a slice of cake, whatever kind they happened to have
in the bakery that day and then imagine what it would be like in different flavors, which
was a little disappointing, but still okay.
But then, whereas in the U.S. I mentioned the up-sell, in Germany I was introduced to
a concept that, until then, had been wholly foreign and unknown to me: the down-sell.
I had imagined myself telling my wedding cake dreams to the salespeople and having them
help me create all that I could envision and more, but in Germany, I was barely able to
get out the first bit of information, that I wanted multiple tiers, when I was asked
how many guests we'd be having at the wedding.
When the salespeople found out that we were going to be having a small wedding, it was like:
oh, well then, I mean, you don't really need multiple tiers on your cake, just one layer will be
more than enough cake for your wedding.
And I was like: yeah no, I know that, but I want multiple tiers on my cake.
No, no, no, no.
You don't need multiple tiers.
But I want it.
No, you really don't need it.
But I really want multiple tiers for the wedding cake. Please!
In the end it really honestly felt like Stefan and I were barely, just barely able to convince
them to sell us a cake with three tiers, my minimum tier amount, and it just went on like that.
We said we wanted three different flavors -- one on each tier -- they tried to talk us
out of it because it would cost more!
We said we wanted it to be colorful, they tried to talk us into something cheaper and
less colorful.
I said I wanted buttercream frosting instead of fondant.
They flat out said no.
There was not a single bakery that I went to that said they would make the cake with
buttercream instead of fondant on the outside for me. They just refused it.
It just felt like, even once I got them to agree to the tiers and the flavor and the
color, I couldn't seem to get anyone to go all out like the cake decorations that
I've seen online and in wedding magazines in the U.S. Or, okay, if not all out then
even just a medium amount out.
It seemed like they were only willing to go just a tiny little bit out.
Even though I was willing to pay for it.
It was just such a different experience from anything that I was expecting.
Very practical.
And I had never experienced that before, that I was like I have some money here and I would
like to spend that money with you, and the salespeople were like: eeehhhh, but do you really?
And I don't know if it's because we were having a small wedding and so they didn't
think it was worth it for us to spend more money on a wedding cake.
But then, you know, that really wasn't their call to make.
It was for me and Stefan to decide if having this wedding cake of our dreams was worth
it to us.
We were the ones who had decided to cut back on other things because we wanted to have
a really cool cake.
And that was our decision to make, not the salespeople.
In the end, the cake cost way less than my soft maximum limit, and it did end up tasting
super delicious.
We got our three layers and our three different flavors and they were so good.
I don't know if I'd ever had better tasting wedding cake.
Although I might be a little bit biased. But it was definitely delicious.
And it was definitely a pretty cake, but it was not the wedding cake of my dreams and
then some.
We went to several different bakeries and talked with several different people, but
we just couldn't seem to convince anyone to accept our money and make us a wedding
cake of our dreams and then some. We just couldn't make it happen.
So my question for you is: What is your take on this?
Which kind of cake shopping experience would you prefer?
And what is your dream cake?
Not necessarily for a wedding or anything like that; just if you could have any cake
in the world, what kind of cake would you want to have?
Please let me know in the comments below.
Thanks so much for watching!
If you enjoy these videos please think about giving them a like with the like button.
And don't forget to subscribe for more Wanted Adventure videos on Wednesdays and Sundays.
And now a Danke Drawing that I drew and a really, really, really big thank you so much to our
patrons who support us on Patreon and help make these videos possible.
Thank you so much for your support.
If you would like to support our videos, you can find a link to our Patreon page down in
the description box below.
Until next time, auf Wiedersehen!
I want wedding cake. Like munch, munch, munch, munch, munch. Wedding cake.
I think wedding cake is really the best cake I've ever had.
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1997-2018 F150 Weathertech Rear Bump Step - Black Review & Install - Duration: 2:41.
Weathertech's Rear Bump Step provides you with a safe, simple way to get in and out
of your '97 or newer F150's truck bed without climbing up or over your bumper and slipping
or falling.
This removal step also provides some bumper protection in parking lots and against anyone
who might tap your rear end in traffic.
The install on this is extremely simple.
All you're doing is connecting this to your tow hitch.
So, I'm giving this a very soft one out of three wrenches on our difficulty meter.
Expected to take you about 15 minutes.
This bump step is nice, because it's relatively lightweight.
It's made out of a durable injection molded resin instead of steel.
So you don't have to worry about lugging this thing around or letting it rust if you keep
it installed outside.
Even though it's made out of plastic, it can hold up to 300 pounds.
I think this is a good load rating, because it'll support you and whatever you're trying
to hoist into your truck bed like wood beams or anything else you might be hauling around.
The top of this step has a molded tread pattern.
So there is less risk of you slipping off like you might if you were standing on your
bumper.
And looking underneath the step you'll see there is some angular fins behind the rear
portion of the step.
This will allow flex and will absorb impacts if you're ever unfortunate enough to have
a run-in with another car, or if you back into anything in a parking lot while reversing.
This step is easily removable since it installs directly into your 2-inch trailer receiver.
However, if you decide to leave the bump step installed, you won't have to worry about someone
trying to steal it since they come with a theft deterrent pin similar to the one that
comes with a bike carrier.
It just adds some piece of mind.
Weathertech's Bump Step is the most affordable truck bed step in this category at just under
$60.
There are other options if you want a step that is a bit longer, or if it is made out
of steel, but those who are gonna start at about $100.
Almost double the price for the same functionality.
I mentioned before this is gonna be a simple installation.
I'm giving this a one out three wrenches on our difficulty meter, and expected to take
you about 15 minutes or less.
We're not gonna be needing any tools once you get the step out of the box.
First, take your bump step and slide the 2-inch square portion into the 2-inch receiver with
the grooved tread pattern facing up.
Align the step to the deepest hole position allowed by the receiver.
Then, insert the hitch pin into the hole and secure the step.
After it's secured, you're good to go.
That wraps up my review and install of Weathertechs's Rear Bump Step.
Check this out and more at americantrucks.com.
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Jamuna News today 28 February 2018 Bangladeshi Latest News Today News Update bd all bangla news - Duration: 12:11.
Jamuna News today 28 February 2018 Bangladeshi Latest News Today News Update bd all bangla news
Jamuna News today 28 February 2018 Bangladeshi Latest News Today News Update bd all bangla news
Jamuna News today 28 February 2018 Bangladeshi Latest News Today News Update bd all bangla news
Jamuna News today 28 February 2018 Bangladeshi Latest News Today News Update bd all bangla news
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Phonics A through F | Funtastic Playhouse | Educational - Duration: 8:35.
Funtastic!
Letter A, ah ah ah is it's sound.
Letter A is where ah ah ah can be found.
Ah ah alligator,
ah ah apple,
an an ah ah astronaut, too,
even ah ah animals we see at the zoo.
When you know sounds
you can start to make words.
Like C-A-T makes a cat that purrs.
Learn the sounds that go
with each letter,
'cause sounds make a word
when they work together.
Ah ah
ah ah
ah ah
ah ah
ah ah
Letter A, ah ah ah is it's sound.
Letter A is where ah ah ah can be found.
Ah ah alligator,
ah ah apple,
and an ah ah astronaut, too,
even ah ah animals we see at the zoo.
Funtastic Reading!
So this is Godiva's food and there's Rags' food. Godiva's food is not for you is it Ragsy? No
Hi guys welcome back to the channel it's Claire and Rags and do
you have a cat who has a special dietary needs? Well I know it's a bit niche but
it's something I have experience with. So Rags and I are going to be showing some
tips and advice for you today to how to care for a cat with it's special dietary needs
now I'm not telling you how to diagnose your cat with any food
intolerances or allergies, that's not my job that is the job of your vet so if
you have any concerns around your cat or you have any suspicions they may be
allergic to something go straight to your vet and they can help you out. I'm
gonna show you some tips on how you can care for a cat with dietary needs
Especially if it's something that is you're not really used to. Now if you a few
years ago Godiva - the other cat in our house and became very very sick. She lost
a lot of weight she was throwing up a lot wouldn't eat her food and was
messing in the house and that kind of thing she wasn't really really poorly
and it wasn't actually apparent what was wrong with her. Now after a lot of vets
visits and quite major surgery it was finally diagnosed that Godiva had
inflammatory bowel disease now this means that Godiva can only have one kind
of food and one kind of food only. She is not allowed to eat anything else it
isn't this particular venison and P food otherwise should become a very sick again
Now firstly if you have a cat with dietary needs and another cat who
doesn't, like we do - You need to make sure that food areas are completely separate
and neither cat can get to each of this food. This is especially important
so Godiva can't have any access to Rags food because if she did manage to get to
her food and have a bit she would become quite sick so Godiva has
her own a food space in the kitchen and Ragsy has
in our bathroom now both cats can't get to this and this just ensures that both
cats stay away from each other's food and they stay healthy. This also goes for
your food too. Godiva's very good at jumping up on the kitchen counter and if
someone's left some food out she can have a bit of a nibble. Again this will
make her sick so if you have this same problem just make sure that whenever you
have the food out that it's put away or it's far from any reach of your cat
Now as barbaric as it sounds cats with special dietary needs are not really
allowed extra treats. Now Ragsy has the occasional dreamy if she's been good but
Godiva unfortunately can't partake in this particular treat, but as we know
treats don't always have to be food! You can schedule some extra playtime with
your cats and get them a hoard of wonderful toys or you can just give them
a cuddle and some attention and a nice groom. Now Ragsy doesn't get treats
often as she does put on weight rather easily so she's been particularly good
at the vets I'll take a home and we'll have a good groom she absolutely loves it
Now this is important not just for cats for special dietary needs but also
cats in general. It's very important for you to keep up to date with boosters
shots and vets visits. Now cats usually have a yearly scheduled vet
visit but Godiva has a couple of extra ones just to keep an eye on her progress
and make sure everything's going well with her diet and her day-to-day
well-being. Your cat like Godiva may need extra medication Godiva was on
steroids for quite a while and if you have any questions or queries or
concerns about your cat being on steroids or on medication don't be afraid to go
to your vet with any questions you have the welfare of your cat is a top
priority for you but also a high priority for your vet too - it's their job
to make sure that their patients are well and cared for and finally this is a
bit of a funny one but if your cat is a prolific hunter and is prone to bringing
outside animals inside it might be a good idea if your cat has a special
dietary needs that they become an inside cat now this might seem a bit cruel for
cats who love going out in the garden and going hunting but it just reduces
the likelihood of your cats eating something that they shouldn't
now Godiva it used to be a very good hunter and she would bring things in occassionaly
though she wouldn't eat the whole thing, she would sometimes have a nibble and
inevitably that did make her sick. Now if this isn't possible for your cats become
an outdoor cat for some reason it might be a great idea to get them a collar
with a bell on it this will alert any sort of critters around that your cat is
about and hopefully make it a lot harder for them to catch anything and have a
bit of bite. Thanks for watching guys, I hope you found these tips useful and
interesting now if you have a cat who has special dietary needs do let me know
in the comment section below I might have missed a few tips or you might have
some additional ones to share with us let us know, Rags and I do love
hearing about our lovely viewers and their cats now if you did enjoy the
video please give us a big thumbs up and hit the subscribe button and the
notifications button to make sure you don't miss any of our videos we love
having you here and Rags and I will see you in our next video bye!
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IT Impossibile creare il file temporaneo scena durante il salvataggio di un file in 3ds Max - Duration: 2:16.
Hi, I'm Sami, from Fawzi academy. In this video, I will talk about.
In 3ds Max, a warning message appears when saving a scene.
Unable to create temporary scene file C\users\[username]\Documents\3dsMax\autoback\AutoBackup01.max.sv$.
The warning keeps appearing during the 3ds Max session.
Alternatively, a saved 3ds Max file or AutoBackupfile will save with the extension: *.max.sv$.
Insufficient hard drive space on the C:\ drive for the default Autoback file saves.
This message will reappear every time 3ds Max tries to auto-save a backup file to that drive by default, every 5 minutes.
Errors in network connectivity or bad server writes that leave the 3ds Max file in a "buffered" state.
To resolve the issue.
Check the C:\ drive properties to see if the drive is running out of space. If so, delete/move any unnecessary files.
Check the location C\users\[username]\Documents\3dsMax\autoback\ and remove any unneeded backup files from it
first. The folder may be filled with previous Max scene backups.
Users can also go into 3ds Max > Customize > Configure User Paths > File I/O tab.
and change the output path of the AutoBackup folder from the default C:\ drive location to a folder on another hard drive with more available space.
Should this issue occur frequently, save the scene to a Local Drive rather than a Network Server or remote Drive.
Hope, this information, is helpful. Thank you, for watching Fawzi academy.
Please, like.Subscribe, share, this video, and visit, our website, fawziacademy.com.
