The chance of developing Huntington’s disease for the children of those affected with the illness is 50-50. Danton Spina, a Syracuse University alumnus, is very familiar with this statistic.

When Spina was 3 years old, his father was diagnosed with Huntington’s disease, a hereditary brain disorder that affects a person’s motor skills and his or her control of emotions. Since the passing of his father in 2007, Spina has met many people struggling with Huntington’s disease, particularly the family members who are strongly affected.

‘There’s actually a significant number of people that are affected by this, especially because if it affects the family so drastically, entire families could be devastated,’ Spina said. ‘Multiple generations will have this disease because the chance of getting it is so high.’

Spina saw an opportunity in the Pepsi Refresh Project to strengthen people’s awareness of the disease. As one of the founders of the Warehouse Architecture Theater program at SU, Spina used his love of filmmaking to propose the production of a feature-length film as his entry to the Pepsi Refresh Project.

The Pepsi Refresh Project is an initiative that was launched by the brand to support social causes with the help of its consumers. Pepsi has set aside over $20 million to support causes in the fields of art, culture, health, environment and education. Anyone can submit ideas to the project’s website in hopes of receiving thousands of dollars in grants. Ideas are submitted each month, and visitors to the site can vote for their favorite causes proposed in the previous month.

Despite the high risk and estimated 30,000 people diagnosed nationwide with the disease, people are still generally unaware of what it is. Spina said this is because, until a few years ago, Huntington’s disease was often misdiagnosed, often confused with Parkinson’s disease. Though the disease has been receiving more attention and the gene sequence causing it has been pinpointed, there is still no cure.

The film will feature a fictional story based on true events combined with documentary-style interviews conducted by the main character, who will speak with people and families affected by Huntington’s disease.

Spina’s movie production plans are currently ranked No. 99 for the $25,000 prize.

According to Spina, the movie’s production and release would not only help generate awareness but also help raise funds to support Huntington’s disease research.

‘A lot of the time, full-blown documentaries are dry and only directly relate to the community it’s about,’ Spina said. ‘A feature-length film … is more accessible than just a straight documentary. I mean, how many people go to the movies to see a documentary on a Friday night?’

Making his movie more film-like also enables Spina to enhance the film’s focus on not only those with Huntington’s disease but also on those who struggle with the diagnosed, such as friends and families. Therefore, according to Spina, the film will primarily center on the relationships between those affected and their loved ones.

‘I’m kind of curious about the relationships and how they’ve been affected, whether it’s romantic or between families and friends,’ he said.

He has not necessarily been promoting his work on the Pepsi Refresh Project, but Spina has talked to other directors about his movie. He has even talked to his boss at Bertucci’s Italian Restaurant to do a fundraiser for him.

‘I have been contacted by a tremendous amount of people giving me information on other contests or theaters that would screen this kind of film or simply telling me their stories, which in many cases are very emotional and in other cases very uplifting,’ Spina said.

While the movie is an integral way to spreading awareness for Huntington’s disease, the publicity of his idea alone has helped spread awareness already.

‘I now am using this as a way to link up with other people in the Huntington’s disease community who want to do the same type of thing.’

dmodiama@syr.edu

Published on January 26, 2011 at 12:00 pm

Contact Danielle: dmodiama@syr.edu | @daniemarieodie