Blog · March 22, 2016


Daisy_Poster_MasterYou know there is a major dent being made into EB Awareness when movies are now being produced to bring forth awareness!

This is HUGE in my book! GIGANTIC!!!

The first movie, released in 2014, was called “Butterfly Girl” and was a documentary-style movie about the real life story of Abbie Evans. More info HERE and the movie can be downloaded via iTunes, Amazon, & YouTube.

There was, of course, My Flesh & Blood back in 2001, a documentary about the life of Susan Tom, which I am humbled to call a friend, and her many adopted children, 2 of which had RDEB like my son.

There are two other movies in production that I am aware of. The first one is called “In Crystal Skin“, which is another documentary-style movie, and producer Robert Stillman is working on a movie about the life of Jonny Kennedy which is going to be called “Don’t Stop Me Now“. I had the pleasure of meeting the producer’s wife and daughters at the EBMRF fundraiser this past November and they are telling me he’s really into this project and making it work, but would not or maybe could not divulge details. I am looking forward to that.

The movie DAISY, which features the “real” Daisy in it, is special because it’s not a documentary per se but a short movie with actors. It’s particularly touching in my view, as it shows how encountering a child with EB has the effect of changing the life of an addict.

To those that might think it’s a stretch, I couldn’t disagree more. I’ve seen first hand the effect my Nicky has on people in general, most especially those that spent at least “some” time with him, to know this is a very reel-to-life situation.

Wouldn’t be great if a big studio, big star movie could be produced that would have even just a small role played by an EB patient and/or at least have Epidermolysis Bullosa mentioned? Well, that’s a worthy goal moving forward.

It’s a goal mostly because it would bring forth enormous awareness. Remember, Without awareness there is no funding, without funding there is no cure. If there is a condition that needs a cure, EB is most deserving in my book, and not only because I see my son suffer every day from it, but because I know how much suffering it brings to the patients and their families.

Watch and Vote!!

Love & Light,