Raising Awareness About Prader-Willi Syndrome

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Michelle Obama

Michelle Obama has started a campaign to raise awareness about obesity and Keegan Johnson hopes this may help find a cure for Prader-Willi Syndrome. Image: Joyce N. Boghosian

Dante’s dad wants people to know about Prader-Willi Syndrome (pronounced like “praw-der will-ee”).

It’s a condition that a relatively small number of children are born with. People with Prader-Willi Syndrome (PWS) feel hungry all the time. That’s hard for most of us to imagine. We’re used to eating a meal and then feeling full for about two hours.

But kids with Prader-Willi don’t feel full. After they’ve eaten, they want to eat again. But of course if they do that, they’ll eat too much—not just three meals a day. That can lead to obesity—being overweight—which can lead to health problems.

Dante, who is now seven-and-a-half, was born with PWS. His dad, Keegan Johnson, wants to make people aware of the condition in order to raise money for research and, eventually, a cure.

In Alberta, researchers are working on medicine that may help people with PWS to feel full after they eat. It will take years of work and lots of funding to get the medicine ready for people to take.

In the meantime, Dante and his family are working to overcome some of the other symptoms of PWS, such as developmental delays.

Dante’s dad says they’ve done a lot of work with therapists and doctors and today, “if you saw Dante, you wouldn’t even know he has PWS. He’s running, laughing, swimming, playing… he’s a happy kid. Seeing all the things he’s been able to accomplish is such an inspiration. He teaches us about priorities in life and inspires us every day.”

Dante is a source of inspiration to his family.

Dante has been a source of inspiration to his family.

 

Johnson is also the president of the Foundation for Prader-Willi Research in Canada. They’ve created a video about PWS. They entered the video in a contest being run by Michelle Obama (the wife of U.S. President Barack Obama). She is concerned about the high levels of obesity in North America and wants to do something about it through a campaign called “Let’s Move.”

Researchers are discovering that PWS has a lot in common with over-eating even in people who don’t have the condition. Johnson says that if they can raise awareness and money, they may be able to cure not just Prader-Willi Syndrome, but also make inroads into the problem of obesity itself.

If Johnson’s video gets enough votes in Michelle Obama’s contest, they will win a trip to the White House and if that happens, they hope to get a chance to speak with Michelle Obama about Prader-Willi Syndrome.

Currently, the Prader-Willi video is in second place. To vote in the contest (with an adult’s permission and assistance), click here.
Update: As of 3 p.m. April 29, the Prader-Willi video has moved into first place.

Note: It is important to have an adult’s assistance with this because voters also have to register—children should never provide personal information over the Internet.

There are many other excellent videos in this contest. Adults can vote once a day for whichever video they like best! The contest ends May 11.

Related links
Foundation for Prader-Willi Research
Let’s Move (Michelle Obama’s campaign to help stop obesity)

CURRICULUM CONNECTIONS
By Jonathan Tilly

Writing/Discussion Prompt
The PWS video is called One Small Step. It refers to the fact that when you are facing a big problem, you can start to solve it by taking just “one small step” at a time.

What is your biggest challenge? Can you think of “one small step” you can take to accomplish or solve it?

Reading Prompt: Purpose
Different texts can be useful for different purposes. What school subjects would today’s article be appropriate for?

Primary, Junior, & Intermediate
Identify a variety of purposes for reading and choose reading materials appropriate for those purposes (OME, Reading: 1.2).

Grammar Feature: Comma (Introductory material)
A comma can be used to separate different parts of a sentence. For example, in some sentences a comma is placed between the introduction and the complete idea that follows–like this one. Here are a few examples from today’s story,

“In the meantime, Dante and his family are working to overcome some of the other symptoms of PWS, such as developmental delays.”

“In Alberta, researchers are working on medicine that may help people with PWS to feel full after they eat.”

“Currently, the Prader-Willi video is in second place.”

Place commas in the sentences below to separate introductory material from the complete idea that follows.

1. After the movie I will go straight to bed.
2. Once upon a time there was an ugly rat with magical powers named Ratbozo.
3. “Firstly I’d like to thank you all for coming,” said the host.
4. Under the table you can find all her coolest comics.
5. Although it wasn’t his first time in the principal’s office he was scared stiff.