Tag Archives: syndrome

People with Down syndrome have trouble using smart speakers. Here’s how Google’s trying to help

Matthew MacNeil might benefit more than most from smart speaker technology — but it has never really worked properly for him.

That’s because the 29-year-old Tillsonburg, Ont., resident has Down syndrome, and devices like Google Home often have trouble understanding people who don’t use typical speech patterns.

“It’s tough when talking fast; it doesn’t pick up my voice usually,” he told CBC News.

But that could soon change. MacNeil is part of a new partnership between Google and the Canadian Down Syndrome Society called “Project Understood,” which is attempting to teach the tech giant’s systems to better understand people who speak differently.

“It’s exciting that Google is taking an interest … it’s a really great partnership,” said MacNeil’s mom, Carolijn Verbakel.

The project started about a year and a half ago with Google’s accelerated science team. That group was working with people with ALS and analyzing data around their speech patterns at the time.

But then researchers realized that they could do more than just analyze this data, said Julie Cattiau, product manager with Google AI. They could use it to make voice technology more accessible to more people.

As it stands, Google Home misses roughly 30 per cent of words spoken by a person with Down syndrome, she said. To change that, Google’s algorithm needs more exposure to a variety of different voices.

“We realized that very quickly, that the most important part was going to be to record voice samples from people,” Cattiau said.

“But we didn’t have examples from people with speech impairments or different kinds of speech.”


Google engineer Jimmy Tobin explains how the company’s software evaluates the sound of a person’s voice. (Canadian Down Syndrome Society/YouTube)

That’s where people like MacNeil come in. He recently visited Google headquarters in California to record a variety of phrases in an effort to teach the company’s systems to better understand his speech patterns.

Now, Google is asking other people with Down syndrome to “donate their voices” online and do the same, and continue to teach the algorithm to understand them.

“It’s really a matter of having enough data,” Cattiau said.

“The more examples it receives, the better it will get.”

Ed Casagrande, chair of the board of directors for the Canadian Down Syndrome Society, said projects like this are huge for people with Down syndrome. The ability to foster independence is key, he said.

“They have the same wants and dreams as a typical person,” he said. “This is such a great milestone for the community.”


Ed Casagrande is the chair of the board of directors for the Canadian Down Syndrome Society. Canadian Down Syndrome Week runs until Nov. 7. (Canadian Down Syndrome Society/YouTube)

Casagrande’s six-year-old daughter has Down syndrome. She is well supported at school, he said, but he worries about what happens after — with employment, relationships and overall independence.

Something like a voice-controlled, self-driving car could go a long way to help foster independence for all those things, he said.

“As much as it keeps me up at night, I’m hopeful technology will make that transition much, much easier,” he said.

Google also has high hopes for the project, but it’s still in its early stages, Cattiau said.

“It’s still very much in the research stage … we need individuals who feel compelled to record phrases and give them to us.”

Even if tangible progress remains a ways off, that the attempt is even being made is huge for MacNeil.

“It made me feel really proud … like we are independent.”

adam.carter@cbc.ca

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Havana syndrome: Exposure to neurotoxin may have been cause, study suggests

The mysterious ailments experienced by some 40 Canadian and U.S. diplomats and their families while stationed in Cuba may have had nothing to do with sonic “attacks” identified in earlier studies. 

According to a new Canadian study, obtained by Radio-Canada’s investigative TV program Enquête, the cause could instead be neurotoxic agents used in pesticide fumigation.

A number of Canadians and Americans living in Havana fell victim to an unexplained illness starting in late 2016, complaining of concussion-like symptoms, including headaches, dizziness, nausea and difficulty concentrating. Some described hearing a buzzing or high-pitched sounds before falling sick.

In the wake of the health problems experienced over the past three years, Global Affairs Canada commissioned a clinical study by a team of multidisciplinary researchers in Halifax, affiliated with the Brain Repair Centre, Dalhousie University and the Nova Scotia Health Authority. 

“The working hypothesis actually came only after we had most of the results,” Dr. Alon Friedman, the study’s lead author, said in an interview.

The researchers identified a damaged region of the brain that is responsible for memory, concentration and sleep-and-wake cycle, among other things, and then looked at how this region could come to be injured.

“There are very specific types of toxins that affect these kinds of nervous systems … and these are insecticides, pesticides, organophosphates — specific neurotoxins,” said Friedman. “So that’s why we generated the hypothesis that we then went to test in other ways.”

Twenty-six individuals participated in the study, including a control group of people who never lived in Havana.

The researchers — comprised of 15 principal investigators and their teams — conducted a thorough assessment of the Canadians’ symptoms, including blood tests and several brain imaging tests.


The brain scan of a Canadian diplomat is shown in an image taken from the report into the clinical study by a team of multidisciplinary researchers in Halifax. (Brain Repair Centre)

“[The results] all support the diagnosis of acquired brain injury in the Canadian diplomats and their families posted in Cuba,” the study report says.

The scientists were also able to test several of the subjects before and after they returned from Cuba, Friedman noted, and the team saw changes in the brain “that are definitely due to that time when they were in Havana.”

High dose vs. low dose

The report also examines different scenarios of neurotoxic attacks that occurred in history, including the Tokyo subway sarin gas attack in 1995 and the death of the half-brother of North Korean leader Kim Jong-un in Kuala Lumpur in 2017.  

It concludes that these cases were the result of high-dose exposures, which is not consistent with what happened in Havana.

The symptoms experienced by the diplomats and their families, rather, are consistent with low-dose exposure, leading researchers to examine the effects of cholinesterase (ChE) blockers in commercial products.

ChE is one of the key enzymes required for the proper functioning of the nervous system. Certain classes of pesticides work by inhibiting ChE. 

Cuba, like other tropical countries, regularly sprays pesticides to kill insects that carry infectious diseases.


Visitors wait at the entrance of Canada’s embassy in Havana, Cuba, on April 17, 2018. A number of Canadians and Americans stationed in Havana fell victim to an unexplained illness in recent years, complaining of concussion-like symptoms. (Desmond Boylan/The Associated Press)

The researchers found that since 2016, Cuba launched an aggressive campaign against mosquitoes to stop the spread of the Zika virus.

The embassies actively sprayed in offices, as well as inside and outside diplomatic residences — sometimes five times more frequently than usual. Many times, spraying operations were carried out every two weeks, according to embassy records.  

Toxicological analysis of the Canadian victims confirmed the presence of pyrethroid and organophosphate — two compounds found in fumigation products.

There was also a correlation between the individuals most affected by the symptoms and the number of fumigations that were performed at their residence.

‘Sonic weapons’ or mass hysteria?

Since these mysterious Havana symptoms became public in the summer of 2017, the main hypothesis about the source of the attacks has been some kind of unknown weapon using sonic or microwave technology. 

With many victims reporting disturbing or even violent noises and pressure in their heads during the onset of symptoms, the idea of an “acoustic weapon” seemed plausible.

Another suggested reason for the symptoms — proposed and defended by several scientists — was mass hysteria.

The symptoms experienced by the victims — headaches, hearing loss, cognitive problems, loss of balance, etc. — are frequently found in the general population, these scientists argued, and can be attributed to many causes. They further argued that these symptoms may have pre-existed in the victims, becoming heightened in individuals worried about their safety in Cuba.

While a psychological component cannot be completely ruled out, according to the results of the Dalhousie study, it seems to have played a secondary role.


Starting in 2016, Cuba launched an aggressive campaign against mosquitoes to stop the spread of the Zika virus. (Yamil Lage/AFP/Getty Images)

Cindy Calkin, a psychiatrist and member of the multidisciplinary research team, said she categorically rejects the idea of mass hysteria.

“I have interviewed all but one or two of [the victims] and I haven’t found any evidence of psychiatric disorder. This is a very strong group, very resilient and there is no evidence of mass hysteria,” she said. “Part of the diagnostic of mass hysteria is that there is no underlying other medical cause that can be found. And we [found] underlying medical evidence.”

For Friedman, the most important outcome of the study is that the team raised a health issue that likely affects a broader population — beyond the diplomats and their families. 

“We [will] continue the research in other ways to try to confirm which of the toxins is more toxic, at what levels — many things are not known yet,” he said. “It’s just the beginning of a research, but it’s what we’re working on now.”

The researchers are now looking to collaborate with Cuban officials to determine whether any Cubans suffered similar brain injuries, as their study only focused on Canadian individuals. 

In an email to CBC/Radio-Canada, spokesperson John Babcock said that Global Affairs Canada hasn’t definitively determined a cause to the mysterious ailments at this point. 

“While we are exploring all avenues, including the research at Dalhousie, no definitive cause of the health incidents has been identified to date,” he said.

  • You can watch ‘Havana Syndrome Mystery’ on The Fifth Estate in the coming weeks on CBC-TV or online.

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Woman speaks out against campaign comparing people with Down syndrome to animals

People with Down syndrome and their parents are speaking out against a campaign to get people living with the syndrome added to the endangered species list.

Ben Tarr, a board member with the Canadian Down syndrome society, admits that the campaign is "edgy," but he is adamant that people living with the syndrome should be on the list compiled by the International Union for the Conservation of Nature.

Tarr could not provide statistics about the number of women in Canada who choose to terminate their pregnancies after receiving a positive test for Down syndrome.

But even in the absence of those numbers, he believes there's a move afoot to eradicate Down syndrome births.

"We`re actually about to embark on a research project here with the University of Toronto where we`ll be able to get some more information about the community here in Canada," Tarr told CBC Toronto.

"For us as an organization, it's about supporting people in the decision making that they need to go through. It`s about providing information and ensuring they have the right information that they need for them."

I don't like people comparing me as an animal, it's not fair.– Francie Munoz

Convinced of a move to eradicate Down syndrome births, Tarr said to mark Down
Syndrome Awareness week this year, the society is applying to be the first people on the endangered species list.

"So we've actually submitted an application to the International Union for Conservation of Nature and we're looking to be the first human species on their list," Tarr said.

"The reason for that is, really, we're looking to garner support. You know, when you look at the population size of those living with Down syndrome, what's endangered is actually the support that we get."

Ben Tarr, a board member with the Canadian Down Syndrome Society, says people living with Down syndrome should be on the 'endangered' list. (Grant Linton/CBC)

But Francie Munoz, a woman with Down syndrome, disapproves of the campaign, saying it compares people with Down syndrome with animals.

She says what she wants is respect and to be able to live her life like anybody else.

"It doesn't matter who you are … I don't like people comparing me as an animal, it's not fair," Munoz told CBC Toronto.

"Love us for who we are, not a character, not an animal."

Munoz was thrown into the spotlight in 2017 when two police officers were caught on dashcam footage mocking her during a traffic stop, describing her as disfigured and something less than a whole person.

The two officers were charged with offences under the Police Services Act.

Munoz's father, Carlos Munoz, says while he appreciates the message the Canadian Down Syndrome Society is trying to convey, he believes they are taking the wrong approach. 

"In my opinion, this type of campaign, personally as a father, I don't subscribe that much to it. I subscribe to the message itself, not the way … it was presented," he told CBC Toronto.

As cute as a polar bear can be, I don't think that anybody should be making that comparison in that sense.– Carlos Munoz

"The parents I have talked to do not appreciate the fact that our children are being compared to animals. As cute as a polar bear can be, I don't think that anybody should be making that comparison in that sense."

He said while the campaign might be sparking conversation, it's mostly among people within the Down syndrome community, discussing whether they approve or disapprove.

Carlos Munoz, Francie Munoz's father, says while he appreciates the message the Canadian Down Syndrome Society is trying to convey, he believes they are taking the wrong approach. (Grant Linton/CBC)

But Tarr said the society is moving ahead with the campaign to ensure they have a seat at the table to talk about "massively important issues" to the community.  

He pointed to issues such as employment, housing, and education.

"When you think about animals on [the endangered] list, we spend a lot of energy and time protecting and making sure those animals are able to thrive, and we want to do that for the Down syndrome community," Tarr said.

"We want to make sure that our community can thrive in life."

Tarr, who has a son with Down syndrome, says he worries about all the things that any parent would worry about — their child's happiness, their child's ability to learn, to grow, to develop into the character that they're going to become.

He said people outside of the Down syndrome community still have a lot of opportunity to help.

"When you think about all the employers out there, you think about people like government that deal with housing and funding; there's so much that this community of amazing people can offer and that's what we're really looking for."

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Inconsolable crying is normal: B.C. program reduces shaken baby syndrome by 35 per cent

An inconsolable crying baby can be very frustrating, but new research shows that helping parents understand why infants cry so much has reduced cases of shaken baby syndrome in the province by more than a third.

A new study by B.C. Children's Hospital and the University of British Columbia looked at the effectiveness of a public education initiative called Period of PURPLE Crying to teach parents that crying is a normal development phase — even if there's no obvious reason why.

"New parents often don't have a good idea of what is coming up in the first two or three or five months of life," said Dr. Ron Barr, developmental pediatrician and a professor emeritus of UBC's Faculty of Medicine.

"No matter what the parents do — they can be perfect parents and excellent at soothing their babies — but there is a certain amount of crying that they do that is inconsolable."

Shaken babies

Being unable to soothe a screaming infant can "drive parents nuts" and is one of the triggers that leads to shaking the child, causing what is known as shaken baby syndrome, which can result in death or serious injuries.

Barr helped develop the public education program that launched in B.C. in 2009, compiling educational material and reaching out to new parents in maternity wards and during postpartum care.

Since then, it's been associated with a 35 per cent reduction in the number of children under two admitted to B.C. hospitals with shaking-related injuries — down from about 10 or 11 cases a year in B.C. to six or seven.

"It's very hard to move these indices, but it's great to have that progress in the province right now," Barr told Stephen Quinn, host of CBC's The Early Edition.

Teaching the signs

Purple crying is an acronym that describes the characteristics of normal developmental crying in babies:

  • Crying peaks between two and three to five months of age.
  • Crying is unexpected and resists soothing.
  • Babies look like they are in pain even when they are not.
  • Crying may be long-lasting and occur more in the evening.

"Some [babies] cry more and some cry less but they all have this pattern of crying in the early months and so if parents are not ready for it, it can be extremely frustrating," Barr said.

With files from The Early Edition.

Read more from CBC British Columbia

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This year's Gerber baby has Down syndrome

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'Anything But Sorry': What to say when a baby is born with Down syndrome

For Ed and Mary Casagrande, the birth of their middle child, Emma, was a moment of celebration. The Casagrandes were told when Mary was five months pregnant that their baby had Down syndrome.

Now, four years later, Emma continues to be a bright light in their family. 

“She brings joy to our family every day. She lights up a room anywhere she goes. She is a blessing. She completes our family,” said Ed Casagrande, a Toronto resident and member of the board of directors of the Canadian Down Syndrome Society.

“There’s nothing to be sorry for.”

On Friday, the society launched a new campaign, entitled “Anything But Sorry: The ‘S’ Word,” that includes a YouTube video, a website with information on how to welcome a baby born with Down syndrome into the world, Facebook birth announcements that can be filled out by parents, even if their babies are now children, and congratulatory greeting cards that can be ordered.

Warning: Graphic language

Casagrande acknowledges that the video includes swear words but says it is trying to make the point that the birth of a baby with Down syndrome is a happy occasion, not a sorrowful one, and it’s time Canadians changed their perception of such events.

“We chose some colourful language on purpose,” he said. “You can say anything you want to parents who have had a child with Down syndrome, but the word you really shouldn’t say is, ‘Sorry.'”

Kirk Crowther, the society’s national executive director, based in Calgary, told CBC Toronto that the video is part of Canadian Down Syndrome Society week. Two other videos will be rolled out this week that feature parents of babies with Down syndrome.

“We are hearing from parents in the office and they are telling us that there has been no congratulations, from the doctor who delivered the baby, to the nurses, to family members,” he said. 

“We are really trying to educate the public to say that sorry is something you don’t say. It’s a new child. It’s a birth to be celebrated. It’s not the loss of a child at all. We are trying to change the perceptions of Canadians.” 

Emma Casagrande

Emma Casagrande, 4, is a middle child, with an older brother and a younger brother. Her father says: ‘She completes our family.’ (CBC)

Crowther said the idea is to get parents of babies with Down syndrome the support they need, especially from members of their communities.

“Congratulations should absolutely be the first thing that anybody hears.”

‘You just had a baby!’

Crowther said the outlook for people with Down syndrome has changed greatly in the last 30 years.

“People with Down syndrome have such a positive future now. There are options to get post-secondary education, there are options to get married, there are options for employment. All of those things have really changed. This is just a step in that evolution.”

In the YouTube video, there is a warning about inappropriate language and then the first frame asks: “What do you say to parents who just had a child with Down syndrome?”

A series of actors, all with Down syndrome, answer the question. “You can say almost anything,” says one. “Like, holy sh-t,” says another. “You just had a baby!” says a third. “Sh-t, yeah,” says a fourth.

“Congratu-f–kinglations!” says the first actor. A few other suggestions are made.

‘The only bad word is sorry’

“The truth is, the only bad word is sorry,” says one of the actors. Then all of the actors say, “Sorry” in low voices. 

“You’re supposed to be celebrating,” says one. “Woohoo,” says another. “So, don’t be sorry about a baby,” says one more. “Be happy,” suggests another.

“Because every baby deserves a warm f–king welcome,” says yet another.

Crowther says the society is taking “a little bit of a risk” by using language that could be called vulgar, but he says an edge is needed to the campaign to make a point. And so far, it’s being well received.

Last year, the society won about 15 awards for its video, “Down Syndrome Answers.” It was considered Canada’s most awarded not-for-profit video in 2016. “We are hoping this does the same,” he said.

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