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Northshore Care has recently supported Autism Speaks by participating in one of their walks in Chicago. I have voiced my disagreement to Northshore over this decision and informed them I will not buy from them as long as they support Autism Speaks. I also suggested they support the Autistic Self Advocacy Network instead. However, a representative of Northshore stated to me today that they stand by their decision to support Autism Speaks.

I would like to ask the DD community to stand in solidarity with autistic people by boycotting Northshore until they stop supporting Autism Speaks and choose to support the Autistic Self Advocacy Network instead because there should be nothing about us without us.

Thank you!

:69_EmoticonsHDcom:

 

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1 hour ago, Hookedondiapers said:

Tell us why Autism Speaks is so evil that we should boycott Northshore.

I'm going to echo this question. Recommending people boycott an organization is a very strong statement. I'm confused why supporting an autistic advocacy group is a reason to  boycott someone.

To the OP, can you please clarify the issue. A search of Autism Speaks doesn't reveal an scandal or issue that would suggest something wrong with the organization.

Little kaiya

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1 hour ago, Hookedondiapers said:

Tell us why Autism Speaks is so evil that we should boycott Northshore

There has been some discussion that Autism Speaks wants to eradicate autism and is working on a "cure" for it.  If this were to be done, even safely, the world would have less originality and really smart people.  Also, it has been said many times that Autism Speaks makes decisions without any input from the the autism community which is obvious hipocrocy. 

* All of the above is what I've heard secondhand, it is talked about extensively online and IRL but I personally don't know what exactly is going on with the organization.  There seem to be strong opinions on both sides.

TLDR; It's complicated.  I recommend researching the issue further before making big decisions.

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56 minutes ago, Firefly 35 said:

There has been some discussion that Autism Speaks wants to eradicate autism and is working on a "cure" for it.  If this were to be done, even safely, the world would have less originality and really smart people.  Also, it has been said many times that Autism Speaks makes decisions without any input from the the autism community which is obvious hipocrocy. 

* All of the above is what I've heard secondhand, it is talked about extensively online and IRL but I personally don't know what exactly is going on with the organization.  There seem to be strong opinions on both sides.

TLDR; It's complicated.  I recommend researching the issue further before making big decisions.

So finding a cure for a condition that effects millions is now considered bad????????!!!!!!!?

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To be honest, I can see why I would support either side. I do not regret being born autistic, but I can see how my life would have been many multitudes easier if I didn't have it.

I have spent a large portion of my life systemically alone because I was terrified of talking to people and interacting with them. I have been wronged by people to many times to bother to trust anyone and to even bother there are good people worth talking to. I can say Autism played a role in my misconception.

I do not know how things would've been if I wasn't born with autism no more than I know what it is like to be born female or black or any other identity, but I wont spend my time regretting how I was born because someone has a problem with me or it has been hard.

Simultaneously, I still have to support a cure because there are people out there who want to not have autism who struggle with it everyday and who were not lucky enough to be born on the higher spectrum. How about the people so cognitively crippled by autism they would never live a normal life? It is a cruelty to eradicate individuality, but the cure won't do that because I won't take it ?.

It is a greater cruelty to deny someone a greater existence because you are looking after your own collective identity. We need to teach people that autism is neither good nor bad it can be a little bit of both. Sometimes, autism is hell on earth for the individuals who have it and can be a great blessing for others. This is why the classification was changed to a spectrum.

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Many people on the autism spectrum (mostly the high functioning end) oppose Autism Speaks because they want to get rid of autism and cure it, that is their goal and autistic people feel threatened by it. I don't feel threatened by them because I know how debilitating autism can be for those on the severe end and how it affects their families and caregivers. Who would wish that on anyone? If there was Anxiety Speaks or Learning Disabilities speaks, I would be for it and not feel threatened because I think my life would be a hell lot easier without these. But I am pretty sure people with high functioning LDs and anxiety would be opposed to them too and feel threatened. No one is going to come to your door and give you these magical pills and demand you to take them to cure your autism. No doctor is going to say "Hey these new pills came out to help treat autism, now you are required to take them or you lose Social Security." 

 

People on the spectrum concern is that they will find a cure where a new technology will come out that will detect a autism gene in the fetus and many parents will start aborting and bam, autism gets weeded out, look at what happened to Down's syndrome? Ever wonder why we never see many young people with it, because many of them are aborted before birth. Parents will get an abortion if there is a positive to DS so they abort it because they don't want the risk of having a DS child. Autistic people are afraid this is what is going to happen. So they oppose Autism Speaks. 

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Many people on the autism spectrum (mostly the high functioning end) oppose Autism Speaks because they want to get rid of autism and cure it, that is their goal and autistic people feel threatened by it. I don't feel threatened by them because I know how debilitating autism can be for those on the severe end and how it affects their families and caregivers. Who would wish that on anyone? If there was Anxiety Speaks or Learning Disabilities speaks, I would be for it and not feel threatened because I think my life would be a hell lot easier without these. But I am pretty sure people with high functioning LDs and anxiety would be opposed to them too and feel threatened. No one is going to come to your door and give you these magical pills and demand you to take them to cure your autism. No doctor is going to say "Hey these new pills came out to help treat autism, now you are required to take them or you lose Social Security." 
 
People on the spectrum concern is that they will find a cure where a new technology will come out that will detect a autism gene in the fetus and many parents will start aborting and bam, autism gets weeded out, look at what happened to Down's syndrome? Ever wonder why we never see many young people with it, because many of them are aborted before birth. Parents will get an abortion if there is a positive to DS so they abort it because they don't want the risk of having a DS child. Autistic people are afraid this is what is going to happen. So they oppose Autism Speaks. 

Im on the Spectrum


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Im on the Spectrum


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E shouldnt go back the 1800s where any learning disabilities people become frowned upon id like to be cured maybe im neutral on this


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14 hours ago, Spiderman said:

So finding a cure for a condition that effects millions is now considered bad????????!!!!!!!?

It's the way that Autism Speaks is going about it that many consider bad.  Supposedly, they see it as a disease that needs to be eradicated, perhaps even genetically.  If that were to happen, it could easily turn into a nasty situation.  Many people on the spectrum, even some lower functioning people, are very intelligent but need more help in some areas. 

The key is to solve/eliminate the bad parts of autism while keeping the good parts.  If there was a way to do that, I would be all for it. 

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https://www.autismspeaks.org/record

I think people need to read this. specifically the part that says "why "cure" has been removed from our mission statement"

I actually read that part and the first part of this heading is, on quote:

"Since Autism Speaks was founded in 2005, research funded by our organization and others has shown that there is no single “autism.” Science also tells us there will be no single “cure.” Today, Autism Speaks is not looking for a cure, and in fact, in 2016, the word “cure” was removed from our mission statement."

Still, nothing wrong with finding a way to fight the more severely debilitating forms of autism, but I think all this outrage is unwarranted.

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For starters, very little of Autism Speaks' money actually goes to autistic people and their families. According to the most recent available financial reports, less than 2% of their funds went to services for autistic families.

Autism Speaks board is also almost entirely non-autistic. They only have two autistic people serving on their board of 26 people. These board members unfortunately are probably more of a token item rather than having their ideas given serious weight. Just a couple of years ago, autistic author John Elder Robison resigned from the board because they didn't listen to a thing he said about their policy and organization. Source: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Many of Autism Speaks' "awareness campaigns" actually do more harm than good by stigmatizing autism. For example, their comprehensive genome project is titled MSSNG because according to them, something is missing in autistic people that makes them not whole. Past campaigns include Combat Autism (like it's a war against disabled people. Sad)

I have attached a flyer that also explains the main issues autistic people have with Autism Speaks.

Some great alternative autism charities are the Autistic Self Advocacy Network and the Autism Women's Network.

AutismSpeaksFlyer_color_2018.pdf

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14 hours ago, BabyBooBoo93 said:

For starters, very little of Autism Speaks' money actually goes to autistic people and their families. According to the most recent available financial reports, less than 2% of their funds went to services for autistic families.

Autism Speaks board is also almost entirely non-autistic. They only have two autistic people serving on their board of 26 people. These board members unfortunately are probably more of a token item rather than having their ideas given serious weight. Just a couple of years ago, autistic author John Elder Robison resigned from the board because they didn't listen to a thing he said about their policy and organization. Source: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Many of Autism Speaks' "awareness campaigns" actually do more harm than good by stigmatizing autism. For example, their comprehensive genome project is titled MSSNG because according to them, something is missing in autistic people that makes them not whole. Past campaigns include Combat Autism (like it's a war against disabled people. Sad)

I have attached a flyer that also explains the main issues autistic people have with Autism Speaks.

Some great alternative autism charities are the Autistic Self Advocacy Network and the Autism Women's Network.

AutismSpeaksFlyer_color_2018.pdf 41.92 kB · 5 downloads

I appreciate you bringing this up and I have read your flyer.   However, there are some issues that I have with it.   Number one your financial information on autism speaks is two years old.   Also, are you saying that doing research, lobbying and doing fundraising are not as important as doing family service, because I tend to think that they would be.

Now as for your statement that there are not enough people on the board with autism I just have to give a shrug to that and say I honestly really don't care.   For example, am I supposed to not buy diapers from companies that don't have only AB/DL's on their board?   Another, example, should I quit my job at Walgreens and boycott them because there are no longer any people from the Walgreens family on the board?  Sure having people that have the condition on the board would be great, but I don't think it would make that much of a difference

Then there is your what I like to call factual opinion about how they stigmatize people with autism.  How do you know that mssng is about the fact that they think that something is missing in autistic people when, as far as I know they have not said anything directly like that.   Now if they actually said that then I would agree with you.   I think that using that worlds largest genome to find more effect ways of treating autism and allowing people to research it would be very effect.   Also, your other example about combat autism is a slogan that has been used by many many organizations to discribe the condition they want to combat, it has nothing to do with war.  

At the end of the day I am sorry I just don't see why I should have to boycott a company that provides good products, good service, and most importantly at a good price (I work in retail) because of something that I believe is being blown way out of proportion to give up all that.

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1 hour ago, Spiderman said:

At the end of the day I am sorry I just don't see why I should have to boycott a company that provides good products, good service, and most importantly at a good price (I work in retail) because of something that I believe is being blown way out of proportion to give up all that.

I'd tend to agree.  Northshore has been very good overall and I don't think a full-on boycott would be justified in this case. 

1 hour ago, Spiderman said:

Then there is your what I like to call factual opinion about how they stigmatize people with autism.  How do you know that mssng is about the fact that they think that something is missing in autistic people when, as far as I know they have not said anything directly like that.   Now if they actually said that then I would agree with you.   I think that using that worlds largest genome to find more effect ways of treating autism and allowing people to research it would be very effect.   Also, your other example about combat autism is a slogan that has been used by many many organizations to discribe the condition they want to combat, it has nothing to do with war.   

Definitions aside, what matters is that people with autism are getting the help they need.

About genetics, I think that altering human DNA (artificially) for any purpose is too dangerous.  There are other ways to help people with autism, such as educational methods, which are less risky.

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16 minutes ago, Firefly 35 said:

I'd tend to agree.  Northshore has been very good overall and I don't think a full-on boycott would be justified in this case. 

Definitions aside, what matters is that people with autism are getting the help they need.

About genetics, I think that altering human DNA (artificially) for any purpose is too dangerous.  There are other ways to help people with autism, such as educational methods, which are less risky.

Well considering the fact that I don't think I am smart enough to deal with any serious topic in the forum.   The fact that I responded to this at all is amazing.

However, I wanted to just say that I agree with you that the most important thing is that people with autism get the help that they need.

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On 6/18/2019 at 9:27 PM, BabyBooBoo93 said:

Northshore Care has recently supported Autism Speaks by participating in one of their walks in Chicago. I have voiced my disagreement to Northshore over this decision and informed them I will not buy from them as long as they support Autism Speaks. I also suggested they support the Autistic Self Advocacy Network instead. However, a representative of Northshore stated to me today that they stand by their decision to support Autism Speaks.

I would like to ask the DD community to stand in solidarity with autistic people by boycotting Northshore until they stop supporting Autism Speaks and choose to support the Autistic Self Advocacy Network instead because there should be nothing about us without us.

Thank you!

:69_EmoticonsHDcom:

I'm with ya, OP.  Autism Speaks is garbage, doesn't actually listen to Autistic people, and promotes othering them.  They have little to no actually autistic people in their leadership, nor do they listen to the thousands of autistic advocates that say that the things they do are harmful.
 


In this commercial:  Autism is EVIL is compared to Aids, Cancer, and Diabetes, ruins marriages, bankrupts parents, robs parents of sleep, makes it hard to go out in public for parents, and takes away parents children and dreams.  Note about how none of this is actually about the effects on the autistic person. It's all about "Poor brave parents of autistic people".  But don't worry, because there are a bunch of neuro-typical relatives that will SAVE the autistic people by combating their neurology!

It has nothing to do with autistic people, and everything to do with making their parents feel better.  

Now imagine you have Autism and one of the things that makes you YOU, is being demonized to the point where you a) are depicted as having no agency, b) are depicted as being a constantly and forever dependent because of your autism, and c) You're less of a HUMAN BEING.  "Autism will take your children from you!"  Implying that Autistic kids are less children than their neuro-typical peers.
 

For additional evidence, watch another Autism Speaks video, "Autism Every Day." In this documentary-style video, parents describe just how horrible it is to have an autistic child while said autistic children are within earshot. At one point, a parent freely admits that she wished to kill herself and her autistic child, but that the only reason that held her back was the fact that she had another child who was neurotypical. She said this while her autistic daughter, who later revealed that she understood exactly what her mother was saying, was right next to her. Autism Speaks did not provide any help for the mother or daughter, or give any indication that this desire is problematic.

You might note that these clips are old, and they are. However, Autism Speaks has never apologized for this horrific and ableist depiction of autism. They removed "cure" from their mission statement, but they have pretty much just recoded it as "research" in their financial distributions. They provide very little actual assistance to autistic people.

Also, Autism Speaks pushes ABA therapy, which is basically like dog training but the "dogs" are kids. I've had students who'd gone through ABA therapy, and getting them to engage and be independent was all but impossible.  They'd become so prompt dependent that they wouldn't do ANYTHING without a prompt and a reward. I had to untrain them and fade the prompts to even get them to do something by themselves.  That's helping no one except for parents who are too lazy to meaningfully engage with their kid, and Autism Speaks is alllll about that.

Finally, and perhaps most horrifyingly, Autism Speaks partners with the Judge Rotenberg Center, a residential "school" for autistic people. The JRC uses painful electric shocks to "punish" behaviors such as hand flapping, vocal stimming, not immediately responding to commands, and other issues. Here is a link to a blog post that has more (appropriately cited) information. https://autisticmama.com/autism-speaks-partners-abusive-therapy-center/


Thanks for bringing this to my attention.  I like Crinklz as a product, but this is no good.  I'll either spend a few more bucks and buy some more expensive diapers, or look elsewhere for cheaper ones. 

-Personalias

P.S.  When diaper companies start trying to push legislation or "treatments" that directly affect how ABDL's live their lives THEN I will care about how many ABDL's are on the board of directors for said diaper company.  When diaper companies start putting out commercials and literature that demonizes me, tells everyone how awful it is to live with me, while painting me as incompetent in knowing what is best for myself,  THEN I'll care about the ratio of vanilla to ABDL on that company's board of directors.

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On 6/18/2019 at 11:35 PM, Spiderman said:

So finding a cure for a condition that effects millions is now considered bad????????!!!!!!!?

Left-handedness affects millions of people. Victorians thought it was a disease and tried to cure it. Eventually we figured out that that was stupid, and invented left-handed scissors instead.

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On 6/19/2019 at 4:10 PM, BabyBooBoo93 said:

For starters, very little of Autism Speaks' money actually goes to autistic people and their families. According to the most recent available financial reports, less than 2% of their funds went to services for autistic families.

Autism Speaks board is also almost entirely non-autistic. They only have two autistic people serving on their board of 26 people. These board members unfortunately are probably more of a token item rather than having their ideas given serious weight. Just a couple of years ago, autistic author John Elder Robison resigned from the board because they didn't listen to a thing he said about their policy and organization. Source: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Many of Autism Speaks' "awareness campaigns" actually do more harm than good by stigmatizing autism. For example, their comprehensive genome project is titled MSSNG because according to them, something is missing in autistic people that makes them not whole. Past campaigns include Combat Autism (like it's a war against disabled people. Sad)

I have attached a flyer that also explains the main issues autistic people have with Autism Speaks.

Some great alternative autism charities are the Autistic Self Advocacy Network and the Autism Women's Network.

AutismSpeaksFlyer_color_2018.pdf 41.92 kB · 7 downloads

99% of the so called suport organizations dont really go to whom the money is supose to help. I think I have only found 1 so far that 100% goes towards helping which is that Saint Jude Children Hospital. All the other ones its to some percentage goes to the organizers pockets which I completly disagree with.

 

I'm still going with Northshore just because they remain in the sweet spot of what i'm willing to spend for high quality diapers.

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This is my take on things generally in response to some information people have stated in this forum.  I know in many cases a lot of the money collected doesn't always go for treatment or research.  I also know that people with a fetish may not want to change their lifestyle.  In some cases, there have been people who have wanted an amputation of a limb or to spend their life in a wheelchair even if they have a perfectly healthy body due to a fetish or other issue in their life.  I also read the point that some people feel if you eradicate something like autism, "the world would have less originality and really smart people".  

I am all for finding cures for things people struggle with.  Cancer cures, cures for autism, cures for spinal damage that causes people to be quadra or paraplegic.  Ways to possibly correct some types of deafness or blindness.  I know in many cases you can't cure a problem but there have been major strides in some areas depending on what the cause of the problem is.  Likewise, I also know some people here would rather wear diapers even if there was an easy cure for their incontinence that didn't cause side effects.  Fine, if that is what they want.

Just because some people would rather live with their medical issues doesn't mean others out there feel the same way.  If research can find cures or better treatments for a medical issue, I am all for it!  History has shown that some times the cure can be worse than the illness, so there is a lot to be said on both sides.  Let those who want the treatments for their issues have those opportunities.  Those who don't want to try new treatments and possible cures and just live as they are can do so, but at least they have the option.  Think of what research has already eradicated.  Polio, Mumps, many other diseases that were rampant a century ago have pretty much been wiped out by vaccines and treatments.  I say let the research continue and at least give people the choice weather they want to try options that may help them or not. 

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17 minutes ago, rusty pins said:

This is my take on things generally in response to some information people have stated in this forum.  I know in many cases a lot of the money collected doesn't always go for treatment or research.  I also know that people with a fetish may not want to change their lifestyle.  In some cases, there have been people who have wanted an amputation of a limb or to spend their life in a wheelchair even if they have a perfectly healthy body due to a fetish or other issue in their life.  I also read the point that some people feel if you eradicate something like autism, "the world would have less originality and really smart people".  

I am all for finding cures for things people struggle with.  Cancer cures, cures for autism, cures for spinal damage that causes people to be quadra or paraplegic.  Ways to possibly correct some types of deafness or blindness.  I know in many cases you can't cure a problem but there have been major strides in some areas depending on what the cause of the problem is.  Likewise, I also know some people here would rather wear diapers even if there was an easy cure for their incontinence that didn't cause side effects.  Fine, if that is what they want.

 Just because some people would rather live with their medical issues doesn't mean others out there feel the same way.  If research can find cures or better treatments for a medical issue, I am all for it!  History has shown that some times the cure can be worse than the illness, so there is a lot to be said on both sides.  Let those who want the treatments for their issues have those opportunities.  Those who don't want to try new treatments and possible cures and just live as they are can do so, but at least they have the option.  Think of what research has already eradicated.  Polio, Mumps, many other diseases that were rampant a century ago have pretty much been wiped out by vaccines and treatments.  I say let the research continue and at least give people the choice weather they want to try options that may help them or not. 

Are you okay with the stance on Autistic people as "less than" in their portrayals, and they're pushing of dangerous and unethical treatments? 

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"According to the most recent available financial reports, less than 2% of their funds went to services for autistic families."

That information ought to take precedence over all the other hoo-hah....

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28 minutes ago, vvp39 said:

"According to the most recent available financial reports, less than 2% of their funds went to services for autistic families."

 That information ought to take precedence over all the other hoo-hah....

Quoting this because I ran out of likes to give.

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On 6/18/2019 at 9:27 PM, BabyBooBoo93 said:

Northshore Care has recently supported Autism Speaks by participating in one of their walks in Chicago. I have voiced my disagreement to Northshore over this decision and informed them I will not buy from them as long as they support Autism Speaks. I also suggested they support the Autistic Self Advocacy Network instead. However, a representative of Northshore stated to me today that they stand by their decision to support Autism Speaks.

I would like to ask the DD community to stand in solidarity with autistic people by boycotting Northshore until they stop supporting Autism Speaks and choose to support the Autistic Self Advocacy Network instead because there should be nothing about us without us.

Thank you!

:69_EmoticonsHDcom:

 

image.jpeg.7ece8d5ee9ba92627dfe8c1ae5c751a5.jpeg

As easy as it is for me to become angry about certain topics, I'm also willing to give credit where credit is due:  I sent a copy of my letter to Northshore, and I seemed to have received feedback from an actual human being.  We sent a few emails back and forth- enough so that I was sure it wasn't a pre-prepped response- and the end result seems to be this.

This is a transcript of the final email that I have recieved from them:

"Thanks for the detailed info. I’ll continue to research further. I’m guessing they have learned a lot from past mistakes. Perhaps they still have more room to improve. I do believe there is a lot of misinformation also being spread about them, much of it politically motivated. I can tell you that our walk in Chicago was attended by thousands of families with one or more autistic family members and all were so thankful for the support they received from Autism Speaks.

 

We were just trying to help more people get the same support that we experienced.

 

As I stated, we’re looking into other ways to help and won’t further support Autism Speaks until we can determine what is the reality with their practices.

Sincerely,
Adam"

(Adam is the President/Owner according to the email)
 

Admittedly, not precisely what I'd hoped for, but I can't begrudge the people who run the company being cautious and wanting to check sources and whatnot.  

So props to Northshore on this one.  

Consider this my official retraction.  (If only for now.  If they can be a "for now" non supporter of Autism Speaks. I can be a "for now" customer. )  

I've also politely expressed curiosity in what they DO find in the interest of fair play.

If anyone who read this also expressed concern, thank you as well, as I highly doubt that a single email gave them pause to reconsider their stance.

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