Working Toward EB Awareness

For the past several months I’ve been hosting a show called “Butterfly Talk” (radio: BlogTalkRadio/podcast: iTunes) where I interview different personalities that are working toward EB Awareness or offer information in regards to EB at large. My mission is to get these individual’s EB awareness efforts recognized, mostly because EB being a rare, often called an “orphan” condition, it gets little airwaves. This is my effort in raising consciousness about EB at large. Whether I am actually making a difference, I don’t know. But I won’t stop. Ever. My latest guest was Jodi Champagne, which is a well respected photographer and good friend of mine, who did the Photographic Documentary called “Courage Under Wraps“, which depicts my son Nicky’s life withRead More

“Butterfly Talk” on YouTube

I am slowly adding all the episodes of “Butterfly Talk” on YouTube as time allows for your listening and viewing pleasure. Butterfly Talk is a monthly radio show/podcast I run myself. The episodes not only are available on the Blog Talk Radio website but also on iTunes. Putting them on YouTube expands the audience, the more awareness the better! This was the first “official” episode with my good friend Lorraine Montello as my first guest. Her son Garrett has RDEB and is 18 years old. She also started a business with her son called “Montello Fine Foods“. Happy Listening!! Love & Light, Post Views: 19

New CaringBridge Blog & Butterfly Talk

A quick note!  I just updated Nicky’s blog at CaringBridge… I talk about a lot of different things going on with Nicky right now. Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ Also… I have some great guests coming up for August and September, but since this month is so crazy for me, I decided that on my next radio/podcast show (Butterfly Talk) I will keep it simple and answer some questions regarding my book Butterfly Child – A Mother’s Journey or Jodi’s book “Courage Under Wraps“. So.. if you have any question whatsoever for me or about Nicky or anything I wrote about in the book, such as Losing Alex or my experiences in raising a child with EB, please leave a comment below inRead More

This and That

So many things to talk about! 1. I have an AMAZON GIVEAWAY going on! if you haven’t already, please enter and share, you can win my book “Butterfly Child”. Who will be the lucky person??? The giveaway will be active until the 22nd, so I hope someone by then wins the darn thing. Enter Now by following THIS LINK. Follow me on Twitter and Retweet please! Thank you! I will have giveaways on different platforms as time allows, on GoodReads for example, and I am researching others as well, so if you don’t win this one, don’t fret, there will be another one coming soon. 2. My next Podcast of “Butterfly Talk” is scheduled for April 21st at 3:30pm. MyRead More