Q & A with James Valvano, director of “The Huntington’s Disease Project: Removing the Mask”


Q. Describe what you and your supporters will be doing between now and the premiere. (The final fundraising push, preparations, production, etc.) How does it feel, after facing so many obstacles, to finally be at the finish line?

A. Since WeHaveAFace.org was created in 2011, we knew it was going to be a huge challenge to garner the necessary funding to complete this film. I am blessed to have an amazing team of Regional Advocates who have helped me spread the word and gather momentum since the onset of the project. Many of us on the team had to utilized our own [limited] financial resources to put the production of the film into motion. The community has always been our main focus and transparency is paramount! Although we are not a 501(c)(3) nonprofit organization, so many people have understood that our mission was more important that a tax write-off. So many across the globe believe in our mission. Their kindness and generosity has helped us bring this film to fruition. This May will be our final push to raise as much money as we can prior to the June 20th Masquerade event. It is important that everyone know that the June 20th event is a celebratory event marking the completion of our mission. The documentary will not be available to see until after it is entered into various film festivals. This is just protocol.
Donors can continue to donate via: www.WeHaveAFace.org/donate

Q. What is your plan for distribution?

A. After serious thought we have chosen to stay independent. I plan to submit the documentary to as many international film festivals as finances will facilitate. After the documentary has been entered into various film festivals, then it will be available to the public to view. I will utilize our Vimeo channel as a pay-per-view platform. I have also implemented a place on our website for support groups, nonprofit organizations, and educational institutions to complete an online form which will place them on a waiting list. It will also provide them with additional instructions and details. Other outlets such as Apple TV and Netflix will be on our list. Our hope is that we can get this documentary out to public in as many venues as possible.

Q. Did your friends and family ever urge you to throw in the towel for your own sanity?

A. Honestly, no one in my personal circle has ever done so. However, there were many times along this journey that I personally wanted to “throw in the towel” and walk away. Back in the early stages of my advocacy, my skin was much thinner than it is now. No matter what, there will be a certain group of critics who make it part of their agendas to try and do everything they can to negate the way others advocate. I’ve grown to learn that no matter what you try to do, you will never be able to please everyone. In all honesty, the mission is about telling the stories of our peers and not to suppress the truth “behind the masks” of our Huntington’s community! In the past, many have said – “The mask is scary!” “Why are you using a scary mask?”
The answer is simple. Huntington’s disease is scary. It is the devil of all diseases. The world will never know what this disease does to the person and/or their family if we continue the path we are currently taking. Silence is no longer an option. As with any artwork, symbolism is key. I chose to use the mask to express that fact that each of us wears one. We hide from so many things in our life. With Huntington’s disease, the mask has been worn for far too long. The following quote kept me focused and on task throughout the filming process:

“We all wear masks, and the time comes when we cannot remove them without removing some of our own skin.” – Andre’ Berthiaume

Q. Are you symptomatic and if so did you find any of your symptoms to be helpful or hindrances?

A. Prior to my diagnosis in 2009, I experienced major bouts of depression and extreme waves of anxiety. Had it not been for my brother’s diagnosis, I wouldn’t have known what “this” was. Over the past few years I’ve noticed more movements in my feet, hands, arms, and fingers. Balance issues exist, but I do everything I can to move forward and take my life by the horns. When I coined the phrase, “I have Huntington’s disease, but Huntington’s disease doesn’t have me” back in 2009, I meant every word! This is how I live my life on a daily basis.
Those who know me can attest to the fact that I have a very weird sense of humor. While I was on my way to film in Oklahoma, I had to stop in Atlanta. At the airport my gate was suddenly changed and those of us with the same connecting flight had to rush to the other side of the airport! While descending on the escalator toward the train, I noticed one of my shoelaces came undone. I got to the bottom and did my best to move away from the droves of people around me. As I tried to tie my shoe, I lost my balance and down I went! Now in the chaos of the Atlanta airport, I was on the floor looking up at the mass of people passing me by. I sat there laughing. Although I assumed that someone would come to my rescue, no one did. My philosophy is simple – laugh as often as possible, or die miserably!

Unlike other production companies, while filming “The Huntington’s Disease Project: Removing the Mask,” the equipment I had at my disposal was very limited. I am a one-man-show: cameraman, sound, editor, producer, and director. Back in 1990 I attended Saint Johns University in Queens, NY, however the technology has changed drastically. It was an awesome experience having to learn to use certain software and other various tools, but my heart has always belonged to the art of film and writing. Not only was this a physical test for me, but also filming all of these stories was an emotional and spiritual test. I made sure there were safety nets in place for me while travelling. When possible, there was always someone there with me. I know my limits, but there are times that we must push them and persevere.
There are many who advocate, yet stumble or veer from their original mission. That was never going to happen with WeHaveAFace.org. I am a man on a mission, and nothing is going to stop me from showing the world the truth about this disease.

Q. What can people like me, in the HD community, do to make sure more people get to see your film?

A. It is very important that our peers know that WeHaveAFace.org is an independent organization. We do not have the support or backing of any Huntington’s disease organization, or any pharmaceutical company. Everything that we do via WeHaveAFace.org is either out-of-pocket, or through the amazing support of our peers in the JHD/HD community. Sometimes the best support is through sharing our information across various social networks. We understand that our community suffers the same financial tribulations as we do. My peers in the international Huntington’s community can urge their support groups to visit our website and get involved. www.WeHaveAFace.org/register


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