“The Purple Road” A Q&A with James Valvano

It is exciting to hear that WeHaveAFace will be filming another documentary! What are your plans?

Our prior documentary, “The Huntington’s Disease Project: Removing the Mask,” received a great deal of international support and we’ve always said that we would produce another film.  For several months we’ve been planning a documentary which encompasses Juvenile Huntington’s disease.  Last night we planned to release the news on our radio show, WeHaveAVoice. However, Mother Nature had her own plans, leading us to reschedule the show for July 7, 2016 at 7 p.m., EST.

It’s never easy creating a film with sensitive subject matter, but we have learned from the previous film that our international peers have embraced our ability to responsibly bring Huntington’s to the global stage.

The decision was made to create an international JHD film entitled “The Purple Road,” and filming begins on August 7, 2016 in Brockville, Ontario, Canada. This coincides with the first Juvenile Huntington’s disease walk in Canada that weekend.  That’s because our first participants will be Cindy Moore, and Erin Wade!  We can’t begin to express our gratitude for both Cindy and Erin.  We’ve known each of them for a while now, and they are both so loving and willing to spread awareness at every turn!

The Purple Road

Why have you decided to branch out with WeHaveAFace.org? 

At our annual convention in May, we released WeHaveAFace Global HUBS in USA, UK, Canada, and Germany. It was a natural progression for us to broaden awareness, fill in support gaps, and of course produce the next documentary.  We are in contact with some wonderful JHD researchers, and medical professionals, and we look forward to having their support in the film.  Dr. Herwig Lange (Medical Advisor for WeHaveAFace Global HUBS), of the George Huntington Institute in Germany, has already agreed to be filmed within the JHD documentary.  It is paramount that we utilize all of our international efforts on this endeavor.

How can people get involved?  Who will you be including in the film?

 These are great questions!  As with the last film, we connected with hundreds of our international peers across all social networks. We have a webpage for the film up and running www.WeHaveAFace.org/JHD-Documentary as we begin the process of garnering interest and facilitating communication.  The “call-out” is open for anyone within the JHD community and their families. We expect that we will be inundated because so many families want to tell their stories.  We recommend that people visit the website regularly for updates.  Also, they can listen to the July 7th News Show on WeHaveAVoice for additional information. Here’s the Vimeo link.

Will the film support research?

 This is yet another great question!  Not only will the film itself provide information and exposure for Juvenile Huntington’s research, all proceeds will be allocated specifically for JHD research. We will have updates on the website as to the specific research that will be receiving the proceeds.  It is time that we use every possible avenue to reach the public and completely fund research for Juvenile Huntington’s disease.

James, on a side-note, are any of the team at WeHaveAFace.org paid?

Sarah, I am so glad you asked me this! This is so important for the community to understand.  Although all of this information is posted on our organization’s website, I will reiterate it.  The Board of Directors, Advisors, and Regional Advocates of WeHaveAFace.org are unpaid volunteers. The decision to remain as an unpaid, volunteer-only organization was to ensure that our priorities remain focused on allocating 100% of donations to our Huntington’s and Juvenile Huntington’s community via education, resources, financial needs and research.  We will continue this policy until a cure is found.  I can’t wait for the day to change the front page of the website to state – THERE IS A CURE FOR HUNTINGTON’S AND JUVENILE HUNTINGTON’S DISEASE!

 

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