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!!!!
Saturday, August 17, 2013
Friday, August 16, 2013
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!!
Friday, August 2, 2013
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.
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...
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.
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.
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| 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...
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| Our boys...too bad Adiel couldn't make it this time! |
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| It was just a beautiful day ... |
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About Me
- Michele
- CT, United States
- I'm a girl with hopes and dreams who has Charcot-Marie-Tooth (I know! You've never heard of it!). In this blog, I talk about my journey with this invisible disease and 2 reconstructive foot surgeries (and a 3rd minor surgery) I've gone through in the last 18 months. And I try to do it all with a positive attitude and a smile on my face :)