Blog · September 13, 2013

Courage Under Wraps

Well, it’s official!!

197736_454698381274245_230522683_nCourage Under Wraps” is now a reality. This is the photographic documentary that depicts my son Nicky’s life with Epidermolysis Bullosa, aimed at raising EB Awareness. It’s available in print and as an ebook. Part of the proceedings are donated to the EBMRF for a cure.

While the book is already available online, there will be a “Book Release Event” on September 20th, 2013 in Los Angeles to which anyone is welcome to come. It will take place at the Julia Dean Gallery at 7555 Seward Street at 7pm. My son and I will be there.

This particular book is a Photo Documentary by my friend photographer Jodi Champagne of what Nicky’s life is like, from the moment he wakes up in the morning to the moment he goes to bed at night. There are many photos in there of bandage changes, trips to the Doctor, holidays, pain and suffering and sibling rivalry. I have to humbly say that to me it is ENORMOUSLY powerful. Of course I am biased, but the feedback we’ve already received echos my sentiments. There is a Facebook page for that book as well which has gotten a great amount of interest, many photos that did not make the book (and some that did!) have been posted, LIKE it today to keep informed on the release and various events.

1150226_507561955987887_1526574479_nThis book aims at making people understand the plight of the families dealing with a rare condition nobody knows about. It takes courage to share, courage to live with this extremely painful condition and our aim is to make EB a more known condition so more funds can go to research which will take us a step closer to a cure.

Thank you so much for caring and please help us spread the word about this brutal condition and help us getting closer to a cure.

Thank you for your support! ♥ ♥