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

CMT's Fab Five

Long ago when I started my blog just to keep my family updated, I never imagined how far it would take me.   I have met some amazing individuals and I am so grateful to have them as part of my life. My very first CMT-BFF whom I met, is my dear Jessica of In The Pursuit of Pretty Shoes. Jess actually came to the hospital during my first surgery and that has been the beginning of a beautiful friendship I am planning to have for life! She has stayed at my house several weekends, we have visited her in NYC, she traveled from Colorado for our wedding reception and she was the person who I talked to at the height of feeling down last November/December who helped me to see the light and start to feel better about everything.

CMT friends are uber special even though you may have never met them in person. CMT friends know and understand what you're going through. If I need to talk about my issues to a "regular" friend, even though they are very nice and understanding, I never feel truly comforted and end up wishing I hadn't "complained" so much. These last two years have shown me that I should rely more on these new cyber friends, who are such a real part of my life, and who are always willing to lend an ear and talk you through difficult times and are so happy to share in your happy ones.

I would love to introduce you to the other less known "Fab Five." We have all become great friends who have more in common than just a silly-named disease. We are young(ish...LOL), love life, always try to keep a positive attitude despite our difficulties, have very supportive families, and have shared passion for TV shows such as Grey's Anatomy. We have many similarities in our personal lives, yet our CMT symptoms could not be more different.

From top left: Melissa, Me, Esther, Nicole, and Lenka

Lenka lives in California and has 2 beautiful children. She interviewed me two years ago for CMT Awareness week podcast (listen HERE) and we've always kept in touch since. Nic lives in Canada, is addicted to the same TV shows I am and has 2 beautiful boys. She was kind enough to talk to me for almost 2 hours to help me with an issue and some CMT related questions I had. Melissa found my blog and read the entire thing in one night  (Insane!), is a super mama of 4 and lives in Utah. We have talked over the phone and several chats and she motivated me into looking at starting a support group in CT. Esther is a mom of 2 with a new baby on the way and lives the closest to me in NYC. It's mind-boggling we haven't met despite our best attempts. It will hopefully happen very soon.

These 4 ladies have helped me more than they can imagine and I am so grateful to each and every one of them. Someone PLEASE forward this post to Ellen so she can orchestrate a surprise meeting so we can become an overnight sensation like Sophia Grace and Rosie!!!! Seriously, I have never met any of them and it would be amazing to spend a few days together blabbing away. It might happen next summer, as Nic plans her family trip to the Big Apple.

Lenka had an amazing idea to do a joint blog where we can either re-post some of our entries or write original material in an attempt to raise more awareness for CMT. You can check it out here: Clicks for CMT: Bloggers Raising Awareness.

You can find all the bloggers and their sites here:
Melissa: My Life With CMT
Lenka: Lenkaland
Nicole: Nattering Nic
Esther: Contemporary Mom of Two

Video of Our 1st CMT Support Group Speaker

WOW...how fancy are we getting!!!! We just had our 2nd support group meeting last week and one of our members volunteered to record the lecture and post it online for everyone to see who may have missed the meeting.

This is Dr. Daniel DiCapua, Assistant Professor of Neurology at Yale School of Medicine providing an overview of Charcot-Marie-Tooth disease. I had my first appointment with him earlier this year and found him to be extremely knowledgeable and really great to explain and discuss CMT with. I am so happy that he agreed to come in to be our first presenter. To view the video, please click HERE.

CMT Support Group Meeting in CT

I think I might have failed to write about the FIRST support group meeting we had two months ago...probably because I had way too much going on (aka leaving my job) and was a bit of an emotional mess...is anybody surprised by this fact anymore?

To make a long story short, I have participated in many support group meetings in NYC and was really missing the opportunity to sit and chat with people who really understand what I go through on a daily basis. I looked it up and found out there was no group in CT and after talking to one of my CMT Cyber Buddies Melissa, who just started her own support group in Utah, she suggested I contact Jeana at the CMTA. I called Jeana about the possibility of starting a group here in CT and she had great news for me. Someone had beat me to the punch and just gone through the entire process and the first meeting was at the end of March.

Lynne - group coordinator - is fabulous! I am so glad she took the initiative to get our group together. We had a great turnout at the first meeting and it was wonderful to meet so many people who lived nearby who were going through the same thing.

I suggested using my new neurologist from Yale, Dr. Dicapua, as a speaker for one of our meetings. He came to our second meeting, which took place tonight, and did a great job...went through the basics about CMT and answered our many questions. This time it was nice to recognize everyone and see how everyone has been...we're starting to get comfortable with one another and caring about the well-being of the group. So many people came up to me after the meeting to see how I've been and I thought that was really sweet.

Our next meeting will be in July and my friend who was coming over to help me with yoga will be our speaker. Everyone loved the idea! She is already familiar with CMT and will be able to cater to our needs...I am so happy to be a part of a group again and to know that I'm expanding my CMT support group not only online, but locally as well.