Wednesday, August 31, 2011

CMTA Video

Here is an awesome video that was made by the CMTA for last year's Awareness Week.


Here It Is!

Here is the link to my newspaper article in the Daily Herald about CMT and CMT Awareness Month!!

Tuesday, August 30, 2011

Making Progress

So much has happened the past couple days, that I finally feel like I'm making progress in my efforts for CMT Awareness Month. It's only two days away!

So, a few weeks ago, I started sending out A TON of emails. To the local newspapers, local television morning shows, state representatives, the governor's office, etc. I didn't hear anything back from any of them, but I hadn't thought much about it since I've been so wrapped up in trying to get this fundraiser organized. Then came yesterday. I woke up to find an email from the governor's office, asking that I draft an official declaration, declaring that CMT Awareness Month would be officially recognized in Utah. I was stunned! I spent a good hour or so drafting my declaration, and praying that I had gotten every word just right. (Which is hard when it's limited to 200 words, and there's so much I could say about CMT and the importance of all this!) I emailed the draft back, and it is now in the hands of the Department of Health for immediate review, and hopefully approval!

I was already on such a high all day from that, but things just kept getting better. Later in the afternoon, I received a phone call from the health reporter for our county's newspaper, wanting an interview with me for an article about CMT and awareness month! I couldn't believe it! The reporter came by this afternoon, and the interview went really well. I got to share a lot of my story about how CMT has affected me and my family, as well as some facts about CMT. We wrapped up the interview, and a photographer is coming by tomorrow to snap some shots of me with my kids for the article, which will appear in the Daily Herald on September 1st! (That also happens to be my birthday - what a great present!!)

I am hoping that these two things will be a bit of a draw to get some other media outlets interested in doing a story on CMT this coming month. Although, I was nervous beyond all belief for the interview today! Hopefully after this, my nerves will calm a little bit as I keep pushing for awareness this month!

By the way, my plans for the fundraiser are coming along, and I should be able to post all about what is going on in the next week or so. Stay tuned!!

Tuesday, August 16, 2011

Fundraising

Yes, I have been the ultimate slacker. And yes, I'm trying to make up for it now. Forgive me?

So, in my efforts to come back with a *bang*, I'm working on putting together a fundraiser for CMT Awareness Month this year. I've been thinking about this for about a week or so, and was initially going to go with something simple, since I have no real experience planning anything like this. Stellar parties? No problem. Weddings? I'm a pro. Fundraising events? NO CLUE!!! Chalk it up to fear of failure, fear of people not taking me seriously, and my general dislike of asking people for money.

Despite all of that, I'm taking a leap of faith and going for it. And I'm not just going for a small fundraiser....I'm going big. I don't want to post details yet, since we're still in the planning phases, but I will say that I'm really excited about this if it all comes together! I'll let you know more details as they come about, but for now.....keep your fingers crossed for me!

Tuesday, August 9, 2011

The Voices of Charcot-Marie-Tooth

http://well.blogs.nytimes.com/2011/03/31/the-voices-of-charcot-marie-tooth/


I found this article on another CMT blog, and I loved it! It puts voices to the disease, and I found myself listening to these people's experiences with CMT and thinking, "Yeah! I totally understand what they're saying!" So, check out this article, and make sure you listen to the "voices of Charcot-Marie-Tooth".