I had a great conversation with a woman from the Mobile, AL office of the Cystic Fibrosis Foundation. We spoke for about fifteen minutes about Ayla and fundraising. She gave me directions to starting a fundraising team....Team Ayla!We will be raising money year round at events that I will tell you all about as they come. We will also attend the National Fundraiser for the foundation called Great Strides in April 2010. I have sent some invites to join my team and welcome all interested parties. I would love to raise some serious money to help fund the research needed to cure Cystic Fibrosis.
If you would like to join my team or donate visit:
I also spoke with her about my desire to help put together a resource for Cf parents. I shared with her about how when dealing with Ayla's diagnosis, I would have loved to have had a private place that I could go to know someone else was dealing with the same issues I was(how I could have used a "Breathing Room" then). Many Dr's tried to recommend individuals to call but that wasn't me, I wanted to deal with this on my own for a while.
She agreed that there really aren't any publications dedicated to the parents and we really need that. I would love to be a part of it, I enjoy writing and am so excited to see what's next for me in the future. I have really enjoyed doing this blog. I know that many of my friends and family are keeping up with us by using this tool and I love that.
But I really want to be involved in something that helps CF parents, I really hope that God will orchestrate this for me. I could be doing something that I enjoy and helping people who are dealing with the same things I am.
That would be a dream and I pray it's in "the plan" for my life, or something along those lines...
Anyways I am so excited about Great Strides and doing some other things as well..
I think the first thing on my list is a Boot-Drive with help from the Niceville Fire Department. I will let you know when we finalize the particulars.
Thank-You,
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So proud of you! You would do an AMAZING job writing for a CF publication. I can't wait to see what the future holds for you!! I love you!
ReplyDeleteHI! I just found your blog through a posting on CF Husband's blog. I'm a CF mom, too. My daughter Emily is 4 years old. You can be sure I'll be bookmarking your page and visiting often.
ReplyDeleteI just wanted to mention that I'm a frequent visitor of CysticFibrosis.com. I'm not sure if you've been there, but it's a great community of CF patients and parents, and I go there when I need to know that someone understands. This is such a difficult road that we are on. It's so important that we know we are not walking alone.
We've done the months of C.diff, too. It's among the worst things that we've had to deal with. Emily was about the same age Ayla is now when she had it last. Uuuuuugh. I hate to even think back to it. I wish I had found your blog earlier so I might have offered some encouragement.
I'm glad to have found you. I'll be around, as I said. You've got a nice blog, and I look forward to reading more!