CMT and Yours Truly on the News

Things have been really busy around here lately!!! And busy in the best way possible :)

I did an interview today with Jocelyn Maminta, a health reporter from WTNH 8, a local TV channel. I am so grateful that my neurologist, Dr. Daniel Dicapua, was also available to do this interview with us and lend his expertise. This has been an amazing opportunity to raise awareness about CMT and discuss our "Slice of Hope" fundraiser on a much bigger forum.

To view the interview, please click here:
http://www.wtnh.com/news/health/raising-money-to-research-rare-disease#.Ug7hD_oV9zA.email

To like our Facebook page, click here:
https://www.facebook.com/ASliceOfHopeForCmt

CMT Awareness Month is going to be BIGGER and BETTER this year!!!!

Charcot-Marie-Tooth Awareness Month

It's official, Gov. Dannel Malloy has signed an Official Statement proclaiming September 2013 as Charcot-Marie-Tooth Awareness Month in the State of Connecticut. Thank you Governor for supporting our cause and giving hope to the millions of people who suffer from CMT.

 And thank you also to Governor Christie for proclaiming CMT Awareness Month in the State of New Jersey! Very exciting times for all of us CMT'ers!!

A Slice of Hope for CMT

Thanks to my physical and pool therapies, the right medication and lots of faith and praying, I have been feeling better the past couple of months. As CMT Awareness Month quickly approaches, I felt the desire to do more this year...to plan my first fundraiser and awareness event!!! It's definitely a bit daunting to take on the responsibility but the idea has been received really well by everyone, especially the wonderful support group I'm a part of.

My husband was born and raised in the town where we live and he works. Needless to say, he knows everyone. So I thought I could take advantage of that and plan an event at our local firehouse where he's a member and ask local business to participate by donating the food and sponsoring our event. All money raised will benefit the CMTA STAR Research Program.

We have lots of ideas in the works but I wanted to share our flyer and sponsor form here...in case anyone would like to contribute. Very excited for this to be a very successful event!

LIKE us on Facebook here: https://www.facebook.com/ASliceOfHopeForCmt

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 :)

Living with Chronic Pain and Prejudice

It's been a long while since I wrote on my blog, but to say the last 6 months has been a roller coaster is an understatement. I got off my meds and got pregnant but sadly miscarried around Christmas time, we took a family trip where my sister got engaged and I struggled with traveling with a scooter for the first time, we gutted our kitchen and lived through the renovation. During the renovation, I decided to go back on all my meds because I was sick and tired of being sick and tired.

Living with chronic pain is hard on your body and on you emotionally. There are days when you wish you could just hit the pause button and walk a mile in someone else's shoes for a change. As you struggle with all the intricacies that come with it, you must also deal with spoken and unspoken prejudice about your condition. Do you really feel as bad as you claim? What about that day when you were more active and in a better mood? Are you maybe just lazy? Is your life really as difficult as you claim because it doesn't seem like it? Why are you taking a handicapped parking spot from someone who really needs it? And these are just a few...

I've just read a really interesting article that describes these feelings to a T...read it here: A Pained Life: Pain Patients Need to be Heard

Unfortunately, CMT falls under the umbrella of the diseases rarely heard about. That's why spreading the word is so important and why we strive to make more and more people aware. Much has been done in the last few years and hopefully this will be a non-issue at some point in my lifetime.