WALK FOR CMT - August 8, 2020
hope to see you there ~ More Details to come
Here are photos from our 2018 event! My amazing family and friend came out to support me. Feeling so loved
I hope to see you next year at the 2020 walk!
It was such an honor to be the ambassador at the 2019 event! Speech below:
FOR ANYONE WHO'S HARD OF HEARING, HERE'S WHAT I SAID:
My name is Julie and I have CMT type 2A. Anyone out there with 2A?
I was really excited when Emily asked me to speak. I’ve been silent for a long time about all of this. It was just recently I even admitted to myself that anything was wrong- In the sense that my muscle were weakening at an alarming rate and it felt like there wasn’t a whole lot I could do to stop it. The problem is, I’ve always been quite active. I grew up doing gymnastics and swimming and diving, I even did a bit of martial arts there for a while. Although, I grew up with weakened legs, I never let that stop me. I was really lucky to have parents who let me live a “normal” childhood.
So it wasn’t until my mid 20s that I had to take some time off from being active to really focus on school, which was really hard for me, I was an overactive child and it hasn’t gone away with adulthood. My program in school was hard and time consuming- they pretty much packed a 4yr curriculum into 2 years, so I was at school from like 9am to 9pm Monday - Friday and even some 1/2 days on Saturday. So yah not much time for an active life and when you add on having CMT, the muscle digression got really bad. The strength in my legs really started to decline and when I was done with school I realized I wasn't able to do a lot of things I used to be able to do and more basic things were harder then they’d been in the past. And when I would try to do these thing, often I would end up hurting myself, which was the worst. It was a really big struggle for me. And I went into a pretty depressed state.
A couple of years went by and I still stayed silent. But over some time I decided I really needed to do something about what was happening to me. I decided to start somewhere I felt comfortable, and oddly for me, that was the gym. I got a personal training that I pretty much swore him to secrecy about my issues. I starting building muscle back in my legs and getting my strength and balance back. But I was still really frustrated and needed some answers. And that’s when I went searching, Which brought me here. Learning about my CMT changed my life. It helped me to get the care I needed to be my best self and live my best life. It lead to the CMTA, where I’ve gotten to meet some really amazing people. People who understand me and what I’m going through. Out of all the things that could have gone wrong with me- honestly, I feel lucky that it was CMT. Seriously, EVERY SINGLE PERSON I’ve met with CMT has been this incredible force of nature. With one goal in mind- and that’s finding the cure and lifting each other up along the way! I feel so lucky to have gone down this path and had the opportunity to meet each and everyone of you.
I was in denial of this for so long, never letting myself be identified as the disabled girl or the girl with the disability. I think it’s because there’s such a negative stigma around that word, disabled, that it made it so hard for me to accept it, but I’m embracing it now and working really hard to defy these stereotypes.
I want everyone to join me along is in this as well as sharing your story with people and spreading awareness about CMT. We deserve a cure. Let’s let people know why, by spreading all of our hope and positive energy- Let’s cure this thing!