The Happy Pod: Hope for people with Huntington's disease

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This is the Happy Pod from the BBC World Service.

Hello, I'm Oliver Conway and in this edition.

I actually feel quite emotional because people with Huntington's disease are desperate for some kind of treatment that works.

Scientists and patients talk of their joy at the discovery of the first ever treatment for the devastating inherited disease, Huntington's.

Also, we speak to a teacher trying to change her pupils' lives with a happiness project.

Math is very important.

writing and reading is very important, but what I want for my students when they grow up is I want them to be happy.

The simple steps bringing a sense of community to a vast housing complex in Mumbai.

All my life, I never had friends, but talking to these women, it's broadened my perspective and really made a huge change in how I look at my life.

And

A new way to add poetry to your life.

We start with a medical breakthrough, the first successful treatment for the devastating brain condition Huntingdon's.

This is an inherited disease caused by an altered gene being passed from a parent to a child.

It results in damage to certain parts of the brain and resembles a combination of dementia, Parkinson's, and motor neurone disease.

As you may have heard in our global news podcast, scientists have found a way to slow its progression by 75%.

That means the decline people would have experienced in a year takes four years instead, giving patients a much better quality of life.

Deborah Goodman's father, grandfather, aunt, and two brothers all had the disease.

I actually feel quite emotional because people with Huntington's disease are desperate for some kind of treatment that works.

So, I just want to thank Sarah and her team because they're so desperate for this treatment.

I'm really, really, really pleased to hear about it.

I was told the only way to stamp out the disease was not to have children, but I do understand why people do have children.

So, there's no judgment there, but I chose not to because I didn't want a child of mine to go through what I went through.

In Britain, the US, and Europe, places where Huntington's disease is most common, approximately 75,000 people have it, and hundreds of thousands carry the mutation, meaning they will develop it.

The new treatment, funded by the Dutch-American firm Unicure, uses a kind of gene therapy via a one-off injection into the brain in a complex and expensive operation.

The breakthrough raises the prospect that younger people who have the Huntington's gene could be treated to prevent it ever triggering the disease.

People like 30-year-old Jack May Davis.

It does make the future seem a little bit brighter, but it's definitely going to help.

You know, definitely going to help with knowing that I have got more time here than perhaps I first thought.

The BBC Sarah Montague spoke to Professor Sarah Tabrizzi, who led the research team at University College London.

I've been working in Huntington's disease for nearly 30 years,

and for the first time, these data, which show a 75%

slowing of clinical disease progression, is to me the most clear data that this gene therapy slows and modifies the progression of Huntington's disease.

Okay, now that 75% slowing, can you explain what that means for a patient and for the patients you treated?

It measures a combination of cognition and thinking tests, neurological tests, function, how well you're doing at work how well you're managing your finances and also

how you as a whole are functioning once someone has symptoms of the disease the time from symptom to death is between 10 and 20 years so a 75% slowing is going to keep people in work longer functioning longer delaying symptoms of disability this is truly a game-changing result.

Now we should explain, your trial involved 29 patients.

Did all of them show that level of improvement?

It was actually divided into a high dose and a low dose gene therapy.

It was those in the high dose that showed the highly significant slowing of disease progression.

The low dose did, but not to such a big effect, which is typical of a dose-dependent effect.

The high-dose group and 12 people, which is typical for a gene therapy, reached 36 months.

And in those people, there was this highly significant slowing of disease progression.

But it was also accompanied by a significant slowing in their functional decline of 60%, which is huge.

I've never seen anything that slows functional decline.

When do you expect to be rolling this treatment out?

We hope that we will be able to get regulatory approval, likely first in the US with the FDA, and then as soon as possible in Europe and the UK.

It's for the community that we work with and the patients and families, I am absolutely passionate about getting this treatment to as many people as we possibly can.

Professor Sarah Tabrizzi talking to Sarah Montague.

What is the most important thing children should learn at school?

I'm very excited about this.

It's the first time I'm doing this.

I spent some of summer creating this happiness project for us, and I'm very, very excited because I have some big ideas.

It's going to be a journey that we take together all year, starting in August and ending in June.

That's Ryan, or Mrs.

Brazil, as she's known to her fourth-grade class of nine and ten-year-olds.

She's created the Happiness Project, a year-long course aimed at teaching her students about happiness and kindness.

Each month, the class takes on a different theme, with September being the month of kindness.

Mrs.

Brazil also makes a podcast with her students called Little Minds Big Talks.

She spoke to the Happy Pods Holly Gibbs along with two of her students, Lulu and Emmett, and started by explaining why she created the Happiness Project.

There's always things that I want to do as a teacher in my classroom, and if it's not something that's available to me, then I'm going to make sure I get it done.

I think math is very important.

Writing and reading is very important.

But what I want for my students when they grow up is I want them to be happy.

What's the reaction from your classroom been like?

And I guess this is where we bring in Emmett and Lulu.

So I wonder if, Emmet, we could start with you.

What's the biggest lesson you've learned from taking part in the happiness project?

I'd say right now it would be that kindness is like very easy to spread if you just start being kind.

And Lulu, what about you?

Being kind is probably

something that brings us a lot of happiness.

Like giving is something that can bring us a lot of happiness.

And when we give somebody kindness,

we might get kindness back in return.

I mean, like, I guess it also kind of made me think more about being happy because I was pretty excited when I heard about it.

I think sometimes it can be a surprise because a lot of the time, again, in school, it's like, sit down, be quiet, get out your math book.

There's something to that.

There's a skill there also.

There's, we have to follow directions and we'll have bosses someday.

And, but there's also something about being aware of our happiness.

And I feel like Lulu almost started to say it because she said, it made me think about my happiness.

Like sometimes that's not even a thing

we think about.

Like, oh yeah, that's something that I want to strive to be.

So I think it's exciting when they're discussing it and talking about it.

What about the high five heroes?

Explain the high five heroes.

We studied about high fives and like how they make you feel.

A high five can make you like really happy, like high fiving yourself.

If you just lightly high five the mirror, it does the same thing.

You feel happy.

Ryan, you've started posting the videos on social media and you've had quite the reaction.

How does that make you feel?

Do you hope that by posting it, you're inspiring other teachers to do something similar?

Yeah, again, it's like, I guess I got to a point where I was like, I mean, we do cool stuff in here.

I feel like other people could also be doing the things that we're doing.

I don't want to just keep it for myself.

I want a lot of people to do the happiness project.

I want a lot of people to learn about high fives and start to encourage each other and themselves.

I want to spread as much knowledge and mistakes even that I've made that could help others.

I want to do what I can to help other teachers, which would then help other students.

We can't learn and access the knowledge if we're unhappy.

Right.

We want to want to show up to class.

We want, my goal is for when the kids have a doctor's appointment or a dentist's appointment or have to go out of town, they're upset that they have to leave school.

That's the goal.

And has it worked, Lulu and Emmett?

Has it worked?

Yeah, I mean, if I have to like go somewhere, travel somewhere, usually I do sometimes like miss school.

Like, sometimes I'm like, I'm kind of like bored here.

I kind of want to go back to school.

Gosh, Ryan, I mean, I think every parent listening would want their child to have you as a teacher.

How would you inspire other teachers?

What would be your advice to other teachers about taking the first step to do something like the Happiness Project?

It doesn't have to be these heavy lifts.

It doesn't have to be, I don't have to have all the knowledge in the world.

We have access to so much out there.

It's not difficult to just reach out to the community that you're in or have discussions around kindness, around gratitude, around social connections, right?

Lulu, how do you feel when you are in Mrs.

Brazil's classroom?

I feel happy, like honestly, if I had like a generally bad morning, sometimes like coming into school like actually helps like cheer me up.

Emmett, what about you?

There are things that I like

really important and really stressing, but school makes me like think about other stuff.

It's like kind of helpful.

What we want to do is we want to go beyond the walls of our classroom and we want to reach out into the community.

We want to greet as many people as we can by spreading kindness and happiness, you know, all over.

And that was Lulu Emmett and Ryan Brazil talking to Holly Gibbs.

I know these days phones are not quite used in the same way as they were last century, but a project dreamed up more than 50 years ago in New York has been given a new lease of life online, and it's stretching far beyond the US.

Carla Conti has the details.

Pick up the phone, and instead of a voice from a call center, you get poetry.

That was the vision of the late American artist John Giorno back in 1969.

He wired up answering machines in New York so anyone could dial a number and hear a poem.

Now, more than 50 years later, that project, called Dial a Poem is getting a digital revival.

A new website has just launched, and the phones are ringing again across the world, from France, Mexico, and Brazil to Italy and Hong Kong.

Here's a taste of what you might come across.

Dial a poem.

Slowly,

as the talk goes on, we are getting nowhere.

And that is a pleasure.

It is not irritating

to be where one is.

It is only irritating to think one would like to be somewhere else.

That was Here We Are Now by the American poet John Cage.

Back in the 60s and 70s, callers might have stumbled upon artists like Patty Smith or Alan Ginsberg whispering verses in their ear.

Today, you could hear a new voice from Sao Paulo or Paris, but if the poem doesn't convince you, you can always hang up and call back to hear a new one.

And that element of surprise is part of the charm.

You never know what you're going to hear on the other end of the line.

Take this, for example, from Brazilian poet Caetano Romao.

The project's organizers call it magic randomness.

One click on the new website, and you're connected to an artist you might never otherwise encounter, whether or not you can understand the language.

Like this from poet Mière Brion, who playfully jumps from French to English in her poem.

Dial a poem has become a global time capsule, a chorus of voices, some of them half a century apart, but all sharing the same line.

And just like in the 1960s, when you've heard enough, you can simply hang up.

Carla Conte

and still to come on the happy pod.

This is Jeannie, she's 14.

I've always wanted to do this special bathing with her.

And now we can, which is cool.

Hopefully, we can do it every year now.

the dogs lapping up the chance to take a dip in a public swimming pool

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Next to India, and a project that shows how small changes can transform the way people feel about where they live.

Govandi is one of the poorest neighborhoods in Mumbai.

In recent years, thousands of new apartments have sprung up, built for people who used to live in informal housing or slums.

But with 25,000 residents crammed into 60 high-rise buildings and no transport to get them to work or school, many began to miss their old communities until one woman inspired them to take action.

Javi Sajdev went to meet her.

I was born on a sidewalk.

I lived my entire life on a sidewalk.

Got married there, had two children, no toilet, no running water, no electricity.

But I always thought I had the right to live a full life.

That's 47-year-old Parveen Sheikh.

In 2008, her shack on the sidewalk was demolished to make space for a bridge.

And then, through a lottery system, her family was allocated an apartment in this housing complex.

We were so excited when we got a flat.

And almost more than that, because we now had documentation for identification papers.

What I didn't have growing up, my sons got an address.

It was a dream come true until it wasn't.

The apartments are small, 256 square feet, just about 5 meters by 5 meters total.

The lanes are narrow and dingy, the houses have no sunlight, and a lot of things weren't working.

Garbage collection, the water supply, elevators.

Berveen mobilized her neighbours to ask for better amenities.

It was during this process she came across architect and urban planner Sandhya Janardan in 2016.

In Singapore itself, the public housing is fantastic.

And I said, why can't we bring the same thinking to India?

Ask the community, what do you need?

Let's figure out what's realistic and what we can achieve and then move forward with that.

She helped connect them to the right authorities, get funds for repairs and services, and encourage them to start cleaning up the space and making small areas more welcoming.

I spoke to 25-year-old Thaiba about it.

We used that map, had a discussion, picked one spot to clean up.

People used to do drugs in that corner because it was that dark.

After we brightened it, they moved out and it became safe.

And when we finished, we realized how useful it was.

Then the COVID-19 pandemic hit and they realized they needed more public spaces.

They created a library.

Kitab Mehan means Palace of Books.

That's Natasha Sharma.

She works with Sandhya and leads the arts and design program.

She told me how they set up the library by combining two abandoned apartments.

We saw that kids really started opening the books and they didn't know how to read, but they would see the visuals and they would understand the story and they would be like, come here, you read.

A couple minutes walk away from the library, they created an arts space.

The workshops here attract older kids too.

They've had rap, slam poetry, photography, and theatre programs.

But even after this second space was blossoming, the residents felt there was a vacuum.

The solution was a third community space called Avas or Voice.

Women from 18 to 65 are welcome to attend workshops or just chill.

I met three 30-somethings, Shafina, Shireen and Saida.

All my life, I never had friends.

I worked as a tailor and every day I just stuck my earphones in, put my head down and worked.

But talking to these women, hearing from the moderators who conduct workshops, it's broadened my perspective and really made a huge change in how I look at my life.

Even for my son, he's seven.

I used to be so scared of letting him out of my sight.

Now he goes to Hamrahi and the library.

I trust the community will look out for him.

We're lucky to have this option.

My relatives live in different resettlement areas and they're so envious.

They're cooped up at home, they have no community.

The women would love a space to get away from their in-laws.

It's where us women have voice.

We hear each other.

At home, no one has time for us.

Here, we are heard.

And that report was by Chavi Sachdev, and you can hear more on People Fixing the World wherever you get your BBC podcasts.

It's that time of year again when the focus in the US state of Alaska turns to that high-stakes competition of who is the fattest bear.

During Fat Bear Week, people watch live streams of the creatures getting ready for hibernation and vote for their favorite.

Christine Loeberg, a ranger at CatMai National Park, explains why it matters.

The Fat Bear Week is very important because bears need fat in order to survive hibernation.

Just think of yourself going to sleep for about six months and not moving, not eating, not urinating, and people find that fascinating, including myself.

They could eat 40 fish or more in one sitting.

So that's just amazing.

Over 100,000 calories a day.

That's just crazy.

And so, you know, these bears are just fascinating.

They're playful.

They're fun.

And it's just exciting to see them go from a skinny bear when they come out of hibernation to these massive

bears that go into hibernation and don't eat for months.

Christine Loeberg.

Voting closes on September the 30th, and we'll have more on the winner in our next episode.

Our next item features a man who has, it's fair to say, become a bit obsessed with finding unusual ways of raising money for good causes.

In 2017, Tom Harrison completed the London Marathon, crawling along the pavement dressed as a gorilla.

He raised tens of thousands of dollars for a gorilla conservation charity in the Democratic Republic of Congo.

Tom, a former police officer in his 50s from southeast England, is hoping to repeat the success by cycling some 180 kilometers across the north of England in a similar outfit.

Richard Hamilton caught up with him during training.

We're cycling along in the pouring rain in Hyde Park in central London, and I'm with Tom Harrison.

And the last time I saw you, Tom, you were dressed as a gorilla and you were on all fours doing the marathon.

And here we are, several years later.

And tell me what your latest challenge is.

My latest challenge does involve an element of being a gorilla.

I'm going to be half gorilla, half paramedic.

The legs of a gorilla, the top half dressed as a paramedic because I'm raising money for Bucks NHS Trust charity.

I'm cycling across the country starting in Whitehaven, Cumbria, going all the way across to Sunderland over two days.

And it was quite an interesting challenge in terms of choosing the costume.

Tell us what that process was.

Well I put my costume up for auction effectively.

Whoever donated the most money got to choose what I wore.

The person with the highest bid decided that they wanted me to retain an element of my innate gorilla-ness,

but also to highlight what it is that we're fundraising for, hence the split costume.

And were you worried that it might have been more embarrassing?

I mean, when I first spoke to you, you said that it might be a chicken, or

the nurse's outfit was the most popular.

Yes, I I was a bit worried that I was going to be a dinosaur.

I guess less so for an embarrassment, but more for the awkwardness of trying to ride a bike dressed as a dinosaur.

You're a bit of a sort of compulsive charity challenge guy, aren't you?

You've done an awful lot of things.

Yeah, I haven't really stopped since being a gorilla.

I hand cycled, started at Mland's End and hand cycled again, dressed as a gorilla over 19 days to John of Groats.

You also got to Ukraine at some point.

Yeah that's right that's probably my other biggest challenge which was about two weeks I cycled from the UK all the way to Ukraine.

I was raising money for a Ukrainian charity that were helping to repair homes damaged in the shelling.

The other thing of course I did was the backwards marathon.

I walked backwards round the London Marathon in support of Ukraine but on that occasion raising money for the Red Cross.

What have you got lined up in the future?

I am planning to cycle to Istanbul this time next year.

And what do you think's been the most challenging one or physically tough?

Crawling the London Marathon was very hard.

I hadn't really used my arms in that way before.

But equally the hand cycle was a really difficult challenge because it went on for such a long long time.

Psychologically, it was very hard.

I do remember one time I'd sort of cycled all morning, stopped exhausted outside of Anik in Northumberland and just cried.

It all sort of got a bit on top of me, but once I'd done that, I could get back on the hand cycle and carry on.

Tom Harrison talking to Richard Hamilton.

When I was learning to swim as a youngster, the basic stroke we started with was doggy paddle.

But should dogs themselves be able to enjoy the experience of splashing about in public swimming pools?

Well, Germany is trialling just such an initiative.

Stephanie Prentice has the story.

It's late afternoon at a swimming pool in Berlin.

And it's a great afternoon to be a dog.

Germany has decided to let some of the outdoor pools in its capital go to the dogs as part of a first-of-its-kind event, letting dogs take the lead in the lanes, with people queuing up all afternoon to help their furry friends get their paws wet.

The head of Berlin's swimming pool operations, Claudia Blachenagel, said the regular human swimmers have been advocating for their pets' rights to swim for some time, and she could no longer look a Dash Hund in the eye and refuse.

Visitors keep asking us if they can bring their dogs.

Dogs are normally not allowed in the outdoor pool.

There are many dogs here that love the water, and there is great demand for this, so we have now simply given in.

With fur in mind, organisers drained the pool and refilled it without chlorine, and admission was calculated per foot and paw at four Euros per dog and two euros per human.

One human at the front of the queue was dog father Mark with his adopted dog, Jeannie.

This is Jeannie, she's 14.

There's also a stand from the animal shelter, and I donated something today because they gave me this little one 14 years ago.

They said she was abandoned, she was 11 or 13 weeks old, and I gave her a good life.

And now, today, I've always wanted to do this special bathing with her.

And now we can, which is cool.

Hopefully, we can do it every year now.

Organizers are yet to confirm if they'll repeat the furry fiesta next year.

But from the sound of it, there'll definitely be demand for more Hundish Wehrmen.

A report by Stephanie Prentiss.

And that's all from the Happy Pod for now.

If you have a happy story you think would make other people smile, we'd love to hear from you.

As ever, the address is globalpodcast at bbc.co.uk.

And you can now watch some of our interviews on YouTube.

Just search for the happy port.

This edition was mixed by Louis Griffin and produced by Will Chalk, Holly Gibbs, and Rachel Bulkley.

Our editor is Karen Martin.

I'm Oliver Conway.

Until next time, goodbye.

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