The truth about WeHaveAFace

I first met James Valvano in December when I went to the WeHaveAFace HD awareness walk in Florida.

I was, from the beginning, impressed by the love and dedication that each family member seemed to direct towards the organization.

I went back to NC with a great feeling, thinking that I had met some special people.

Last week, I spent several days in Reidsville, NC for a screening of The Huntington’s Disease Project: Removing the Mask.

I finally got to meet and fall in love with Mary Etta Robertson and several members of her family.

During the days that surrounded the preparations for screening the film, I got the opportunity to talk with James, Ian, Mary and Amelia at length (and James W. via skype) about whatever topics they chose.

Every word uttered was related to helping people, planning to help people, and developing new ways to help people all over the world who are dealing with HD and JHD.

There was at once an urgency and a joy about the journey they had embarked on. The dedication that I saw in Florida was alive and well in Reidsville, as members of the organization connected in a comfortable, familiar manner to discuss how to enhance the lives of people facing the unthinkable.

The truth is that WeHaveAFace is a group of great people doing amazing things.

Never complaining.

Never wavering.

Always on target.

After the screening I came home to distractions, other responsibilities and things that competed for my time.

But members of that organization, I came to realize, connect every day from morning til night and share a vision that is remarkably selfless and admirably far-reaching.

They are working to make lives like mine more bearable.

I sleep better knowing the whole truth




3 thoughts on “The truth about WeHaveAFace

  1. I have watched it in its infancy and i am excited to see it grow. Even as short as 10 years ago, there were no FB groups and ways for people to connect, thinking they were alone in this fight. i believe this is the beginning of a great movement.

    I saw the pictures you posted and they look like great people

    Liked by 1 person

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