A Meeting of the CMT Chicks

I decided to write this blog for purely lazy reasons...so I wouldn't have to tell the story of my pursuit of surgeries to my husband, my parents and my sisters over and over again with all the details. I never imagined that by deciding to share my story on this public forum, that I would gain so much, especially with the people that I would eventually meet through here.

One of my very dear friends now, who is always there for me in moments of happiness and sadness, who is more involved in my life than friends who I've known for years, is the first CMT friend I made through this blog...Jessica. I am so thankful for her friendship and for having her in my life and honestly, it all happened because we were both CMT bloggers.

Jess and I on one of our first outings together...the day we met Bernadette!

Then I went on to meet four amazing women in all different parts of the US and Canada, who have also been an amazing support system and great friends. Each one of us has been doing our part in spreading the word by blogging away about our lives with CMT and all the shenanigans we get into. We started off by creating a private group on Facebook for the five of us where we could discuss things more privately, share tips and ask questions of one another. And then someone, sorry I can't remember who, came up with the wonderful idea that we should all create a joint blog: Clicks for CMT: Bloggers Raising Awareness. Our joint blog has been a great venture for us all and given us an opportunity to do more for our cause.

But I live in Connecticut, Esther is in New York (we were able to meet at the Bernadette screening in NYC), Melissa is in Utah, Lenka is in California and Nicole is in Canada. We would LOVE to have a weekend for girls' chat and to just finally meet in person when we have all shared such deep personal thoughts and feelings and really relied on one another for support.

Esther and I got a HUGE treat this week because Nicole and her family came to NYC for their summer trip. We all planned to meet at Frank Sinatra Park in Hoboken, NJ this past Wednesday. It took us all a little while to find each other, but when we did, we just had the best time!!! It's just such a great feeling when you have known someone for a few years and then you FINALLY get to hang out and chat...I could not have asked for a better afternoon! It was great to see Esther again and hear about her adorable kids and to meet Nicole and discover that she is just as wonderful and bubbly as I pictured in my head! 

Another treat was to finally meet Jay as well...after all we've read about him! I think it was great for John to meet Jay and hear about the role he plays in his family since John's is so similar in ours...

Our boys...too bad Adiel couldn't make it this time!

It was just a beautiful day ...

 

CMT may be an obstacle and there are days when you sure wish it wasn't a part of your life, but if it weren't for CMT, I would have never met these wonderful people who will always be a part of my life!! Now the goal is to meet Melissa and Lenka...soon enough, we hope.

More CMT Awareness...

...courtesy of Bernadette! I have talked a lot about Bernadette, her documentary, and her efforts to spread the word on CMT.

She did an interview with The Indie Chicks website at the end of last year and I just wanted to share it here.

Bernadette Scarduzio: Charcot-Marie-Tooth Warrior and Inspiration 

Click HERE


Enjoy and pass it on :)

"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 :)

CMT in the News Again...

....thanks to Bernadette!!!!

Click here to view article: http://www.kpvi.com/s/EKry8HZ_aUmx975JHoJSoA.cspx

Bernadette on the News

I am so thrilled that CMT is getting more and more media attention. Please take a minute and watch this clip about Bernadette's documentary, which is in its final stages:
http://www.nbcphiladelphia.com/video/#!/news/health/Living-With-CMT/135645588

You can also check her website for more updates: http://www.bernslife.com/ 

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 =)

"Bernadette"

I just stumbled upon this video on Nattering Nic's blog and I am BEYOND excited!!! The word on CMT is getting out more than ever and this just gives me so much hope that help is on the way.

Click below to see the trailer that brought tears to my eyes:
"Bernadette"