Boy with Muscular Dystrophy Speaks to Politicians About Rare Disease

Cameron Dixon is a 17-year-old boy living with muscular dystrophy. His family was first told that he would most likely never be able to walk, eat, or talk, and that was the hopeful outcome. As a child, doctors were worried he might not even survive.

Now Cameron is enrolled in college and despite his muscular dystrophy, autism, OCD, lordosis, and scoliosis diagnoses, he still leads a very active life. He even plays Power Chair football.

Additionally, he’s become a vocal advocate for the rare patient population.

The Patient Voice

PharmaPhorum has been running a series called Patient Voice. Their goal is to provide a platform for individuals living with rare diseases to share their everyday hopes, joys, and struggles with the healthcare industry. They believe that listening to the patient voice is the only way to truly understand their needs. If scientists can hear these needs directly from the patients, they can conduct research specifically centered on what patients desire most.

But, researchers aren’t the only ones who have an impact on patient lives. Politics also plays a big roll in the patient experience.

Cameron Dixon has been meeting with politicians to ensure that this information is also portrayed to the individuals who can make impacts on the policies surrounding healthcare. He’s accomplished this through the Rare Youth Project.

The Rare Youth Project

The Rare Youth Project is a program run by the Rare Revolution Magazine specifically aimed at providing children living with rare diseases the opportunity to share their own experiences. It also allows participation by those who don’t have a rare disease themselves, but who are a caregiver to someone with a rare diagnosis or are otherwise deeply affected by a rare disease. Last November, participants in the project were given their own special edition in the Rare Revolution Magazine. The magazine now plans to make a youth edition of the magazine every year.

Cameron was a political editor for the November youth edition along with Rowan Wallace, an eleven year old who is a caregiver. Rowan’s mother and brother are both diagnosed with familial cold autoinflammatory syndrome type 2.

Through the Rare Youth Project, the two boys interviewed Andrew Bowie, MP for West Aberdeenshire and Nicola Sturgeon, leader of Scotland’s National Party.

“I hope that the meetings I had with the politicians will stay with them. Hopefully, they will go on to keep thinking about rare diseases and they will raise awareness of the issues themselves.”

Cameron says he’s proud of his diagnoses and he is committed to helping advance cures for all rare diseases. However he also says it’s not all about cures, it’s also about improving the daily life of people living with rare conditions by improving accessibility and care standards. He knows that in order to accomplish this, people who possess political power must also be knowledgeable of rare diseases and on board with advocacy efforts.

You can read more about Cameron and his involvement in the Rare Youth Project here.


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