A little bit of a begging post today…

The girls and I typically do the Crop Walk every year. I don’t often put my fundraising information out there…because I hate to beg…but, I’m begging for something else this year.

My best friends son has Cystic Fibrosis. It is a disease that affects about 30,000 Americans. Because it’s such a rare disease, with not a lot of people affected, it gets very little federal funding for research. People who are diagnosed can expect a life span of about 37 years. Some live longer, and too many die much younger. A CF warrior named Eva Markvoort died last Saturday, waiting for her second lung transplant. (if you want to read an inspiring blog,http://65redroses.livejournal.com/ is a great one…but, be prepared to get lost in it, and have tissues)

We are very, very lucky that D is as healthy as he is. It’s attributed to his having a fabulous, proactive care team at his CF center. Hopefully, he can maintain his health, but, CF is a progressive, fatal disease. It is almost guaranteed that Jenn will outlive her son.

It’s also personal to me, because Mariella is treated like a CF patient. She doesn’t carry the genetics, but her belly and lungs behave exactly as a CF patient’s do. Her pulmonary meds are those of a CF patient. Her gastro meds are at a CF patient’s dosage. All the research that is done to help patients with CF helps Mariella as well.

I know things are tight this year…and I know that everyone has their own “pet” charities to donate to. I ask that you consider donating something to raising money to research for CF. NINETY CENTS of every dollar goes directly toward research. It is actually one of the best charities out there for efficient use of funds. You don’t see the public service announcements on television for CF, like you do for other diseases, because the foundation believes their money is better spent in a lab than on advertisements. It’s word of mouth that keeps the foundation in money.

Thanks so much…


1 Response to “A little bit of a begging post today…”

  1. 1 Tash May 18, 2010 at 6:47 pm

    Well, it took me a while but I finally got round to acting on this. Silly form though made me fill in a State even though I’m not in the US or Canada. I picked Colorado, just because there is a town called Nederland (the Dutch name for The Netherlands) in Colorado 🙂 It didn’t seem to care!

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