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A Fight to Fund a Cure

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A Fight to Fund a Cure

Carolynne B., Blogger

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A Fight Rare diseases kill more people than Aids and Cancer combined annually, but government funding is often limited and granted to foundations a case to case basis. The funding for Mucopolysaccharidosis is provided not from the government, but through donations. In 2016, the National MPS Society granted $335,000 to foundations who are willing to search for a cure. Although that sounds like a large number you have to keep in mind there are seven forms of Mucopolysaccharidosis. That averages out to about $47,857 per each form of MPS. This is very limited, especially considering that Cancer gets $4.93 billion dollars of annual funding. All variations of MPS are 100% fatal. The lack of funding results in these children suffering through painful lives and it prevents a cure from being developed.

Hunter Syndrome is the second form of Mucopolysaccharidosis, and it is also the form that ProjectAlive.org was created to fundraise for. Due to Mucopolysaccharidosis II being the only subdivision of the disease that is inherited through the X chromosome, it is very hard and unique to treat. The parents of the children who suffer from Hunter Syndrome have to accept that they will eventually lose their children–or so people think. Although death is inevitable for these boys, their parents won’t let them go without a fight. Saving Case and Friends is a foundation ran by a parent of a child with Hunter Syndrome. This foundation then created ProjectAlive. This is a website that posted a series of videos to raise awareness for boys with Hunter Syndrome.

The videos were launched in June of 2016, and it all began with the #WhenIGrowUp video. Following this video was a series of social media posts of children saying what their dreams were for when they grew up. It was a striking way to emphasize that these kids won’t have the opportunity to grow up. There’s a large amount of celebrity support of the foundation. Jared Leto, Dave Ramsey, Pete Carroll, Jon Berg, and Jeff Hyde were only a few of the celebrities who spread awareness for the campaign through posting short videos.

The entire purpose of the ProjectAlive campaign was to raise awareness for these boys who suffer through having Mucopolysaccharidosis, and it did reach its goal. Many celebrities got involved, and it introduced many children to the world of being an advocate. Through posting a video, many people became aware and started to fight to get these kids a cure.

7 Comments

7 Responses to “A Fight to Fund a Cure”

  1. Ryan K. on May 9th, 2017 8:12 am

    I didn’t know that rare diseases kill more people than AIDS and Cancer. Also the video was a really nice touch and it was really cool to see what parents were doing.

  2. Orion H. on May 9th, 2017 8:17 am

    That’s crazy. I didn’t know this disease existed. It’s insane to think that it is 100% fatal and people will die from it. I hope more people find about this disease so we can all help it.

  3. Haley U. on May 9th, 2017 8:28 am

    Before you every told be about Mucopolysaccharidosis, I had never heard of it. It really broke my heart after finding more about it and how little funding Mucopolysaccharidosis gets is incredibly sad. When I met Jack, I was heart broken. He was a sweet little boy and knowing that he will not be able to grow up into an adult killed me. Also, talking to his Mom just made me even sadder. I mean if I were a mother that had a son with Mucopolysaccharidosis, I don’t think I could handle it. So just seeing her spread awareness and fighting to look for a cure is incredible.

  4. Celeste C. on May 9th, 2017 8:32 am

    This blog really shows how deadly this disease is and how many people are affected by it.

  5. Jacob.C on May 14th, 2017 10:22 pm

    I really liked your picture link. It made me want to read about your topic. Great job.

  6. Esly Q. on May 15th, 2017 8:20 am

    That’s honestly really sad how this disease can cause all this pain to people. I had no clue this disease even existed.

  7. Stephanie D. on May 15th, 2017 8:29 am

    I had already known about Hunter Syndrome, but not the severity about it. I think the video really shows what it’s like for them. When you read the article it gives you facts, but when you watch the video you see these are normal people living normal lives. There isn’t anything special. I think this shows you that this can happen to anyone.

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