Posts Tagged ‘cure’
Gardening CF style
She's such a good sport.
I’m not sure exactly where I’m going with this post, but I feel a strong need to get some words out. Julia is one smart little cookie and she is getting to the point in her life where she knows things. One thing she is realizing is that she’s just like all the other kids in most regards, but there are things about her that make her just a bit different. Julia has cystic fibrosis…she knows it…we all know it. But, Julia has decided that she doesn’t want to have CF anymore. As a parent…what are you supposed to do with that one?
Treatments are beginning to get a bit more challenging. Julia doesn’t want to do treatments. If you saw your big brother and big sister never doing any treatments, would you want to do them? I sure wouldn’t. I find myself saying, “It doesn’t matter if you want to do them or not.” As well as, “Do you want to do this the easy way or the hard way?” Julia knows that treatments are going to happen no matter what, but I don’t think that’s going to stop her from trying to be just like everyone else.
I explained to Julia that scientists are trying to develop a pill for people with CF so they won’t have to do so many treatments. Julia keeps asking me when the pill will be ready so that she won’t have to do lots of treatments. I wish I had an answer for her. That breaks my heart.
Please join us on May 19th for the Great Strides walk to benefit cystic fibrosis. I think now, more than ever, we need a pill…a cure so Julia and all people with CF won’t have to do so many treatments. Go to www.cff.org/Great_Strides/JannaMills and donate today!
Please join us in our fight against cystic fibrosis.
Yesterday was the big virtual Outrun CF event. This race was held anywhere, any length, and anybody could participate. Here are some parallels I noticed on yesterday’s run:
I ran alone.
This is actually the perfect metaphor for how I feel in this fight against CF, sometimes.
I faced headwind about 50 percent of the run=more work/harder.
At times things move along very smoothly. Julia’s cystic fibrosis is kept at bay…managed. Then comes headwind. A twist is added. More treatments + more medicine=more work/harder.
Running twelve miles sucks.
CF sucks.
Running twelve miles hurts.
CF hurts emotionally and physically.
I felt like giving up, but I didn’t.
Sometimes I feel like giving up, but I don’t.
I kept going even though I didn’t want to.
We get Julia’s treatments done…no matter what…even when we don’t want to.
I couldn’t wait for it to be over.
I can’t wait for a cure.
Yesterday I outran CF and I will today and every day until a cure is found.
This week has been landmark in the CF world. The drug VX-770 is showing very promising results in its phase three clinical trial. Patients are showing improved lung function…on average a 10 percent increase which is fantastic! This drug also reduces sweat chloride levels in CF patients which means that it is treating the underlying cause of CF. This is huge…very huge…we are closer than ever to an actual miracle pill…a cure.
VX-770 is designed to treat patients with a specific gene mutation…unfortunately a mutation that Julia doesn’t have. However, this drug is laying new ground for more miracle pills to be developed to treat different gene mutations. VX-809 is currently in development and would treat patients with the delta F508 mutation…a mutation that Julia does have and in fact most CF patients have this mutation.
Read the entire press release by clicking here.
These advancements toward a cure couldn’t be made with out the financial support of the Cystic Fibrosis Foundation. There has never been a better time to invest in a cure. We are so close…so close. This would be a true miracle for Julia and all those who are affected by this devastating disease. If you’d like to join Julia’s Warriors in our fight against cystic fibrosis, click on the image below. We have two great ways for you to get involved!
Click on warrior Julia to find out how you can help us in our fight against cystic fibrosis.
It's TOBI time!
Pseudomonas can really wear a girl down...
I’d like to share with you a song written by a man who lost his battle with cystic fibrosis and is sung by three CFers who are fighting the good fight. Enjoy! The first is the music video and the second is the making of the video.
