"Bernadette" Screening at NYC Indie Film Fest

Yours truly, Bernadette, and Josh Taub

Bernadette Scarduzio is a fellow CMT'er who has made it her mission to raise awareness about CMT. "Bernadette" is a film that offers the world a view into the challenges and difficulties of living with Charcot-Marie-Tooth disease. Filmed over four years, audiences are invited to join Bernadette’s journey and her transformation from patient to advocate. Bernadette and filmmaker Josh Taub intend to make CMT “a household word,” elevating the cause to a national and international level, hopefully paving the way for more research funding and ultimately a cure.

The movie was screened at the NYC Indie Film Fest today and I was able to get a handful of tickets while I was still in Brazil. I couldn't wait to catch up with Bernadette again and also, finally meet my dear Fab Fiver Esther.

I first met Bern over 2 years ago, when I stumbled upon a trailer for her movie randomly at 3am one night I couldn't sleep (story of my life!). Here's what I wrote about it then: http://myjourneywithcmt.blogspot.com/2010/08/lots-of-new-cmt-friends.html.

My dad, my hubby, Elke, Veronica, and Anthony

I was very lucky to have a great group of supporters come watch the movie with me. Since I have been crying at the drop of a hat lately, I knew I needed and wanted to be surrounded by some of my closest family and friends.

Movie Poster

I absolutely LOVED the movie!!!!!!!!!!!! I cannot wait to be able to show it to everyone I know. Bernadette's story is beautifully told. She is just the BOMB! She made me cry (75% of the time! LOL), she made me laugh, and she also told my story. It soooo resonated with me and my friends were so grateful to have seen it and to really get what I've been talking about this whole time. This movie is really going to do wonders for our community: to educate doctors, family and friends. It will be great to not have to deal with "the biggest disease no one has ever heard of."

And among the many highlights of today, at the top of my list was meeting Esther!!! We have known each other for a while now and I feel like I know so much about her and vice versa. Even though we don't live that far away from one another, it just had not worked out for us to meet up yet. Unfortunately, we didn't have much time to sit and chat because there was so much going on, but just the little amount of time we had made me feel like I have known her my entire life!!! Esther - it was truly a pleasure to meet you and Adiel...I already can't wait for our next meeting and we need a lot more time next time!!!

Me and my girls - I look a little too excited in this pic, but oh well!

Esther and I right after the movie...can you tell I've been crying?

Esther and I with Bernadette

Esther and I with Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation

Today was a long and tiring day but so worth it! I am SOOOO happy! And this movie has definitely made me want to do even more to help spread CMT awareness!!! Let's all do our part :)

EXTRA! EXTRA! Read All About It!!!

Today is a very exciting day for our collaborative CMT blog: Clicks for CMT. The Hereditary Neuropathy Foundation wrote a great article about it (Kudos to Melissa for getting this interview). To read the article, please click HERE. It's so exciting that our Fab Five blog is getting this exposure!! 

We have had over 3,500 views this past month alone!!!! When the 5 of us set out to do this, we definitely did not imagine that it would get so much momentum so quickly!!!!

Keep up the wonderful work girls!!!!

Lots of new CMT Friends

I couldn't sleep on Wednesday night (shocker!) and I was browsing the net at 3am on Thursday and found Bernadette's video (see previous post). After viewing and really being touched by it, I scrolled to the bottom of the page and realized they were having a fundraiser that very same night in NYC. I sent the info to Jess to see if she wanted to go to the event with me.

To make a long story short, we were really happy to make it to the event, had the pleasure to meet and talk to Bernadette and also met Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation, an organization dedicated to finding the cure for CMT. It was really nice to hear how much is being done to help find a cure for this debilitating disease. I commend Bernadette for making this video and sharing her life and story with the world...

To watch more of Bernadette's video, click HERE. The video is right on the home page.

Me, Jess and Bernadette

Today I had the pleasure to meet another CMT'er who originally reached out to Jess. Lisa and I talked for hours about CMT and how it affects our lives and I really felt like I've known her for a long time...I actually feel this way when I meet and talk to most CMT'ers.

These are complete strangers who share my struggles and who really understand what I'm going through. It is so comforting to talk to someone who really gets it.

It's funny that I started this blog only as a means to keep my sisters, who live in Brazil, updated and also because I didn't have to tell all these stories so many times. I figured it'd be easier if they just read it. I never meant to send out the link or share it with anyone. And little by little, this blog has connected me to so many people that I may never had had the chance to meet had it not been for this. I am really happy to have met them and hope that we can be there for each other...especially during our upcoming surgeries =)