WhyWeNeedToFund WeHaveAFace.org 

Many people making HD Pie in the Face Challenges suggest HDSA (or the national agency from whatever country they are throwing pies in) as a place for people to donate. A noble cause to be sure. Everyone wants money for research.

But there is another, very important part of our community that needs funding, one that can raise a lot of awareness. The police mishandling of HD patient Jeffery Bane horrifically underscores that our need for awareness has been no greater than it is now. We are poised as a community, ready to pounce.

And James Valvano is poised, too. In fact, he has been waiting for us to catch up to him.  He’s ready to finish a film that will rip off the mask that the HD community has been hidden behind for too long.

If you’re affected by HD and you use social media, chances are you’ve seen material from WeHaveAFace.org and director James Valvano, asking for funding for the documentary “The Huntington’s Disease Project: Removing the Mask.”

But if you think the project has been completed by nor or that it is completely funded, you’re wrong.

We’re doing a great job raising awareness by throwing pies. More people know what HD is already. But we are collectively scratching a surface that Valvano’s film will ultimately penetrate.

“The Huntington’s Disease Project: Removing the Mask” aims to educate an international audience through first person accounts to dispel myths and reveal hidden truths about HD. People will know what it is like to have HD. They will see it, and then they won’t be able to unsee it.

Valvano recently spoke with Sara Bostonia, the videographer who filmed Jeffery Bane’s savage handling by police and is serving as interim spokesperson for the Bane family. “We will be working closely together and await the family and their decisions to tell their story on camera in the future documentary,” Valvano said. “It is so very important that we receive the financial help to create this film.”

I agree with him. It is important. We need media that addresses HD globally and thoroughly, that embodies the theme of our awareness movement. And that’s what WeHaveAFace.org has been working hard to provide for us.

“I am tired of hiding, says Valvano. “So are thousands…The masks are coming off!”

While it is NOT a NON-PROFIT and donations are NOT TAX DEDUCTABLE…

Your dollars will go a long way and do a lot of good for the HD community.

So donate now if you can, and make sure you mention the film in your challenge video.


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