My thoughts and feelings on different life experience's and being a Mom living with Cystic Fibrosis.
Tuesday, June 26, 2012
My Dream for CF..
Wow! Been too long since I blogged last! Proof I have a tendency to not finish things, the blogger challenge, I failed. Moving on..... Let's see I have been feeling great, we went to Disney in March, I'll post a blog about that soon I hope. I had clinic in May, PFT's were same, weight was same, still hoping to increase both by the end of the summer.
We had the annual Great Strides walk Cystic Fibrosis in Edmore that I coordinate. We did fantastic, raising over $12,000.00! I had some great awareness opportunities this year as well. Myself and some volunteers were featured in a couple news paper articles. My cousin's daughter nominated me for a Pay it Forward Person of the Week at our local FOX news station, so they did a story about me and the work I do for the Cystic Fibrosis Foundation. That lead to some other opportunities for fund raising and future events. A local EMT/firefighter had written a book called The ER loading dock and donates proceeds to different charities. After seeing my story on the news he contacted me and wanted to donate 2 months worth of his book proceeds to the Cystic Fibrosis Foundation! So make sure you go here and get your copy by August 17th! I also volunteered at a new CF walk location this year in about 30 miles north of me. A family I meet last year through the Edmore walk decided to coordinate their own walk in their home town, their son Parker has CF. That event was today and raised over $15,000.00! I'm pretty proud of our area, with 2 walks we have raised nearly $30,000.00 for CF research, that is simply fantastic! I was asked to share "My Dream" for CF, the CF foundation has a series of videos on their youtube page of different peoples dream for CF in the future. This is what I shared today. Hi, I'm Jamie Purchase, I am 29 and I have CF. I had many dreams as a child, I wanted to be a princess, a doctor, a figure skater, a model, a beauty queen and the list goes on and on. But what I dreamed of most was to not have CF or be defined by it. My dream is the same today. I dream of a day when CF is known not because it's a deadly genetic disease, but because it is no longer a deadly disease. I dream of the day I don't turn on my computer to find another friend has lost their battle against CF. My dream is a CURE!
I have lots of topics for blogs on my mind, and now that I have a laptop again I hope to post more regularly again :)
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