Showing posts with label A Slice Of Hope for CMT. Show all posts
Showing posts with label A Slice Of Hope for CMT. Show all posts

Tuesday, September 17, 2013

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.

Saturday, August 17, 2013

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!!!!

Monday, July 22, 2013

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