Tuesday, January 31, 2012

KALYDECO!!! and My passion =)

Describe a Passion you have - Day 18

Of course I have many different, very deep passions. I am a very passionate person and everything I do is because of passion. I think my passion changes daily; maybe even hourly. It truly all depends on my mood and what stikes me as the most important thing at the moment.

Why do I think this?

Because this morning as I was babysitting and the little one was watching her morning cartoon, I wrote out a blog about my biggest passion in life being working with children and helping them. My second biggest passion was just helping people in general. And I had my third biggest passion as finding a cure for CF.
But I think that has all just went down the drain tonight.... I think my number one passion, for the moment, has changed....

Why do I say this? What changed my mind?

Well because I am beaming with excitement and hope because KALYDECO WAS APPROVED BY THE FDA!!!!! (This is a new CF treatment that is LIFE CHANGING! - I will talk more about Kalydeco further down)

So one of my passions? Finding a cure for Cystic Fibrosis. Helping people who are fighting CF live a better life. Working with families who are struggling financially to get treatment for their loved one. Supporting those going through the transplant process needing to raise hundreds of thousands of dollars. Spreading awareness about Cystic Fibrosis and getting it noticed.
I want to make an impact; not just a little one - but a big one. I want to help. I want to change lives. And more than anything I want a cure to be found.
Ever since I joined in the battle of fighting for my husbands life about 5 years ago I have been passionate about raising money and awareness for CF. I've raised money for Great Strides. I've done my best to share projects and videos of CFers to help spread awareness. I've been trying my hardest to share and spread the word about The Moganko Project so CF can be spread to a bigger audience. I didn't want to see my husband suffer and struggle for every dang breath he took. I wanted to go out and live out lives instead of being stuck inside and in the hospital nearly every day. I wanted to be "normal". I was envious of those CFers who had better health than Spencer. We desperately needed something more for him, something I could not alone give him - but, unfortunately, it just wasn't available in Spencer's much-too-short life span. When he was sick for those last 4 months in the hospital, my sole concentration was raising money for him to get a transplant and to help him succeed in his therapies and treatments and to keep him positive. I had no view outside of saving my husbands life. My passion for helping other CFers and their families got buried.
Spencer's passing put a new spark of life into me. It resurfaced my passion to help others living with CF fight, survive, and thrive. I made SO many friends with CF or related to CF in some way this last year and I am determined to help them so that they do not go down without a fight. Since I lost Spence, I have been very driven to use what money was left over from medical and funeral expenses to help others going through the transplant process, and needing a boost financially to help with treatments and medications. I want to do whatever I can to help. I just need to find the right way in going about this - but it WILL happen.
I have thrown myself into trying to figure out new ways to spread awareness about CF and try to raise money. All of this is a work in process an won't happen over night. but it will!

And then today's news of the FDA approving Kalydeco THREE months early... Wow.

That fueled my fire even more. Gives me an even bigger passion for fighting for my lovely CFers.

Kalydeco is a new treatment for CF that treats the root cause of CF. It targets the cells. This is breakthrough for the CF community as it is the first medication to do this. This is a HUGE step towards finding a cure.

The thing about Kalydeco is that it only treats a mutation present in 4% of the CF population - that is great news for them! But it also leaves 96% of the CF community without this life saving and changing medication. They are still working towards developing a treatment for more common mutations. But these more common mutations prove harder to treat and it is VERY expensive.

Did you know that the Cystic Fibrosis Foundation gets NO government funding?? Every single penny that is used to produce treatments, help, research, and eventually a CURE comes from those affected from Cystic Fibrosis in some way whether it be the patient, the caregiver, the friend, or the families. It is ALL up to the public to fundraise to raise this money. I heard that it takes approximately $12,000 with every HOUR of research that is done. WOW! That is a heck of a lot of money. And that is why it is SO important that we raise funds. We cannot get to a cure without doing so.

These reasons are just a few of why I am SO passionate about this. I know, I know... I went on a spiel about all of this - but I hope you learned something about CF, Kalydeco, and myself.

Want to help out? Donate to the Cystic Fibrosis Foundation. www.cff.org =)

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