Sunday, August 15, 2010

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 =)


Anonymous said...

Honestly - I think the single most valuable thing I have gotten from the internet is the opportunity to meet (virtually I realize) people who also share the CMT struggle. So many years I felt isolated and alone in CMT land. Its incredible the connections that the internet has woven for me with other CMTers.
So awesome you went to Bernadette's fundraiser! (And so jealous...NYC is my most fave place in the world!)

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