A Fight to Fund a Cure


Carolynne B., Blogger

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.