Reach for the Stars!!!

It's been four days since our "Slice of Hope for CMT" fundraising event and I still can't believe how much we accomplished. Our event was a complete success with a full house, delicious pizzas and dessert pies, over 50 items being raffled off and over $13,000 raised!!!! Yup! Almost three times our original goal of $5,000.

The Chief of Police, aka John's boss, also made an appearance to represent the mayor and read the proclamation declaring September 13 as Charcot-Marie-Tooth Awareness Day in Shelton!!

When I first thought of doing the event, I thought we had a lot of potential since my husband was born and raised in Shelton and we would probably get a lot of support. The final results were beyond my wildest dreams. I originally wanted to set our goal around $3,000 because I thought $5,000 might be too much. HA!!

I have a background in marketing and event planning and expected this to be a lot of work. Well, it turned out to be even more work than I thought, but the rewards were also so much sweeter. It's amazing what you can accomplish when you plan to do something like this...something for a CAUSE...something that will help others and yourself.

I have been overwhelmed by the outpouring of support, financial donations, and words of encouragement. So many people have approached us and mentioned how they never heard of CMT and how they would have never guessed I had any health issues. So many people have offered help and prayers. And so many others have simply just said what a great job we are doing at spreading the word.

As the event organizer, I knew everything that was going to happen that night, yet, I got the biggest surprise. Jeana Sweeney from the CMTA, drove up from Pennsylvania to support our event. This is the second time she drives up for a fundraiser that we're involved in and I was so grateful that she could be there to help us. To my complete shock, during our thanks and what I thought was going to be a short presentation by Jeana about CMT, she presented me with the CMTA I Am A Star Award!!! I was completely speechless. Lynne Krupa, our Support Group Facilitator, went on to read the emotional letter my sister submitted, which you can read here.

I am so thankful and honored that the CMTA chose me as their recipient. I see so many posts on Facebook and online about active CMT'ers and I can't believe they chose lil' ol' me.

I've been in "hibernation" since Saturday, pretty much just sleeping and relaxing...the event definitely took a physical toll, as much as I tried to sit whenever possible that night. I feel like we accomplished so much here in Connecticut this Awareness Month and I'm so proud of all the work we did to get there. I would encourage anyone who is interested in taking a more active role to do so. It may be taxing on our bodies but it's very fulfilling for our souls.

Publicity from CMT at the Tea

Hi y'all,

I'm always very happy to see news about CMT anywhere...I just continue to hope that the more we hear of it, the sooner we'll have doctors, family and friends understanding more about it and our daily struggles. I just never thought little old me would ever make it onto a newspaper helping to bring awareness to our cause so I'm obviously over the moon!!!!

I am still so grateful that my old firm supported the CMTA at this event and exposed CMT to a new audience as well as helping us to fundraise. 

CLICK HERE TO READ THE CAPTION

CMT at the Tea ... Part 2

To read Part 1....click HERE.

I am a little behind on my blog, but I guess I'm catching up tonight. The Women's Tea took place on May 12 and it was a wonderful experience. I am so glad that I got to meet Jeana in person, who drove 6 hours from PA and spent two nights in CT; and hang out with Lynne and Ruth Ann outside of our CMT meetings. It was great to sit down with these lovely ladies and get to know more about them, their lives, and their CMT story.

Yours truly, Jeana, Ruth Ann, and Lynne

We weren't quite sure how interested the guests would be to learn more about CMT or if they'd just stop by the table, grab a tchotchke and run for their lives before we got a chance to say hello. We were pleasantly surprised when so many of the guests not only came over to our table, but stayed! They were SOOO interested in finding out more about CMT, in hearing our stories, and asked many questions. A common theme that we got was: "But you all look so normal!"....ummmmm, yes we do! Normally this phrase irritates me, but I could tell they didn't mean it in a negative way...they were really just not sure what to expect of this condition they never heard of.

Jeana had a chance to speak in front of the group and we collected some additional donations throughout the event. I was extremely grateful to have my old firm choose to highlight CMTA in my honor...to raise awareness and to fundraise...it truly showed me their support and that they appreciated me. I was grateful for the opportunity to meet Jeana and to hear so much about the CMTA, its programs and current research...it definitely gave me hope that maybe something will happen in my lifetime to help those of us suffering with this condition and I feel even better that I was able to participate in a fundraiser event, however small, but it gave me a great sense of accomplishment!

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.

CMT at the Tea

Even though the week started out rough and uncertain, it didn't take very long for me to receive an unbelievable surprise! I guess the Big Man Upstairs is really keeping an eye on me :)

I am so sad to leave my job because I work for a truly great firm with great people who really care about you. They've been working with me for a few months try to accommodate me to see if I'd have a better quality of life. One of the favorite aspects of my job is party planning and we do quite a few events throughout the year. The firm has hosted a "Women's Tea" for the last 15 years and they always spotlight a charity/organization to bring awareness to that cause and also raise some funds.

The focus is always geared towards women, so it came to me as a complete shock, when I arrived at work yesterday and my boss asked me if I'd be ok with the an organization representing CMT being highlighted at our upcoming Tea. I almost fell out of my chair!!!! The suggestion came from one of the biggest honchos at our firm and everyone thought it was an amazing idea. I am soooo touched by their beautiful gesture.

I don't hide the fact that I have CMT but I don't broadcast it either. I bring it up if I'm talking to someone and the conversation ends up going in that direction. I've worked with quite a few people there who probably have no idea that I would have anything wrong with me at all. So they have drafted a beautiful email that's going out to the firm to explain my departure and how they'd like to support CMT because it would be the best way to send me off.

Of course, I ran to get in touch with Jeana at the CMTA to see if they'd be interested and if someone would be available to come to the event in CT. Thankfully Jeana herself will be coming up (she's the person who I just talked to about a month ago about possibly starting a support group here) and I'm so excited to meet her. I'm sooo excited that this wonderful group of people will learn about CMT and about the possibility to raise some funds for research.

I'm also happy that they are sharing my story in such a beautiful way, instead of a dirty little secret that would be talked about in the hallway or the water cooler. I'm happy that if, God willing, I am able to work in the future I will have a great network of individuals to reach out to who already know the professional I am and the work that I do...

Very exciting turn of events indeed....like they say, when one door closes, another door opens...

CMT Awareness Month 2011

Here is a sneak peak of the official CMT AWARENESS MONTH poster art. This was designed by some very talented high school students in Florida.

Let's continue spreading the word so CMT will stop being an "invisible" disease.

Podcast with Lenka

Today I was very happy to "meet" another blogger I've been in touch with since I started this blog. I had the pleasure to "meet" Lenka over the phone for a podcast she's doing to kick-off CMTA Awareness Week.

Lenka lives in California and interviewed 3 people with CMT from North Carolina, Texas, and Connecticut (me). We have CMT types 1A, 1B, and 2. She wrote a great entry on her site as a result of our discussions.

Please take a moment to read and listen ... It really is amazing how people spread all over the US who have never met can have such similar experiences. If you want to start by listening to my conversation with Lenka, fast forward to minute 60:

Podcast! CMT Stories with Three Special Guests

Happy CMTA Awareness Week!!!!

My Buddies are CMT too :)

Click on pic to see entire thing...

Blue Circle: Nic
Red Circle: Little sis, Mica
Green Circle: Jess

I am CMT

CMT Awareness Week is almost here and the CMTA (Charcot-Marie-Tooth Association) has set up this special website: www.wearethecmta.com

Please take a moment to browse through the site where you can find facts about CMT, events going on this week, the many faces of CMT (can you spot me in the crowd?), and most importantly, donate. If you can, please donate to CMT research so hopefully we can have some form of treatment or medication in the near future and who knows? Maybe even a cure....