if you know me you probably already know my cystic fibrosis story. you probably already know why i’m writing this post. what you probably don’t know is how incredibly uncomfortable i feel writing it.do you want to know what the hardest part about having cystic fibrosis is?

it’s not the hospitalizations. it’s not the dozens of medications or the airway clearance treatments. it’s not the doctor appointments or the lung function tests or the infections. it’s not the fact that because of cystic fibrosis i also have to deal with other things like kidney stones, osteoporosis, diabetes and anxiety attacks.

no, the hardest part for me is why it’s taken me this long to write this. the hardest part is asking for help.

“i need help.” three little words that are much easier to utter than it is to deal with all of the things i listed above, but there you have it, i hate asking for help.

i think (ok i know) it’s a control thing. there are so many things about cystic fibrosis that i can’t control. i can and do spend hours every single day taking care of myself and things are still going to happen. lung infections will continue. all the other crap will continue.

cystic fibrosis never goes away. 

taking care of myself, by myself, makes me feel like i’m in control. it’s as close as i can get to feeling like i’m winning the battle. a battle that, technically speaking, can’t be won. yet. because there’s no cure.i need help.

my sister, emma, is spearheading an enormous fundraising campaign to support cystic fibrosis research.

there are tons of new treatments in the cystic fibrosis research pipeline. treatments that i hope to be able to take some day in the future. but i have to get there first. that’s why i need your help.

as i write leann’s legion of cf supporters have raised a little over $18,000!

you’ll probably see that $18,000 and think that’s awesome (because it is) and assume that’s good enough.

wrong.

guess what happens when we hit the $20,000.

did you guess a $20,000 match from an anonymous donor? BOOM!

if we hit that $20,000 mark, our efforts will be doubled. that’s at least $40,000 towards the very research that’s going to keep me kicking and screaming and breathing and feeling uncomfortable about asking you for money for many, many years to come.

if that doesn’t compel you to make a donation, consider this:

there are over 1,800 different genotype mutations in the cystic fibrosis gene. you know how no two snowflakes are alike? sort of the same with cystic fibrosis. each person may carry a different combination or set of genetic mutations. each combination could potentially require a different treatment plan. that is to say, if a new miracle drug comes out and it’s not targeted at my specific genetic mutations, i can’t take it. it won’t do me any good.

i have to wait until the research finds the magic treatments for my specific mutations – W1282X and Delta508. the cystic fibrosis foundation will not stop the research until 100% of cf patients can be treated and ultimately cured.

the only way cystic fibrosis is going to go away is if the research keeps moving forward. the only way to keep the research moving forward is to fund it. simple as that.

i need your help. click HERE to make your donation. you are going to save my life.

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