EB Awareness

July 23, 2020

My Interview with the Mark White Show!

The Mark White Show · The MFH Good Deed Segment: Epidermolysis Bullosa Awareness with Silvia Corradin A Big Thank YOU to Mark White for Helping us spread EB Awareness! Love & Light, Post Views: 1,275

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April 23, 2020

Nicky’s Life Part 75

March 2017 – This is still one of my favorite pictures ever! Kaley Cuoco on the set of Big Bang Theory hugging my Nicky. She’s a champion for EB Awareness and is amazing!  More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 1,189

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October 24, 2018

Epidermolysis Bullosa Awareness Week 2018

WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list....

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November 14, 2017

Help Nicky raise EB Awareness!

Nicky was born on November 25th, 1996 and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). EB is a rare genetic skin disorder, his body does not produce a vital protein that glues the layers of his skin together, hence the slightest friction causes painful blisters and wounds. His body...

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April 25, 2016

From Defensive to Educational

As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly....

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March 22, 2016

Daisy

You 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...

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December 27, 2014

The Importance of EB Awareness

A quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important....

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October 1, 2014

Giant Leaps for EB Awareness

This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself! Last year, right around this time,...

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April 22, 2014

EB Awareness

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many...

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October 8, 2013

Courage Under Wraps Gallery Opening

September 20th was the magical day that the book ‘Courage Under Wraps’ by Jodi Champagne was displayed at a Gallery in Hollywood along with many other photographers’ works. This is the Photographic Documentary Book about the life of my son with Epidermolysis Bullosa. Here are some photos from the event....

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October 7, 2013

My Radio Interview & Other Musings

As some of you may know, I’ve been a rather active advocate for EB, or, rather, Epidermolysis Bullosa, my son’s skin disorder, since he was born. I am in the process of writing my book, Butterfly Child, which is the story of my son’s life with EB and I am...

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