Sunday, December 11, 2016

Can You Help Me?

THANK YOU to everyone who has donated, sponsored, and participated in one of my CF events! 

WHY do I do them?  I want to see CF cured and the CF Foundation is pushing to CURE CF too! Your donations really do go toward research for a CURE. Did you know the CF Foundation is the only non-profit to financially support (in some way) all CF research for a CURE!!!!!

Did you know I take over 4 different types of nebulizers a day and my most important ones weren't discovered until after I was 5 years old? Did you know I had lots of trouble with my first couple brands of enzymes, I'm now on a newer brand? I take over 50 pills a day and very few of them existed in the 80s. In fact, the CF Gene wasn't even discovered or understood until after I was born! 

When I was born I was told I wouldn't live to be a teenager, but as I got older new advancements in medicine (for CF) kept coming to market. These drugs (along with the dedicated work from my parents) kept me alive. G-Tubes, mediports, new medicine to fight CF bugs & increase our lung function, keep our liver enzymes down, help us not reject our transplants. This is all research that has been made available thanks to science over the years!! 

Kalydeco, was the first CF-gene targeting pill to help correct the defect in one of the CF mutations. This of course, only helped bout 4% of the CF population, as it only works for one CF mutation. There are thousands of CF mutations and all CF patients have 2 mutations. Therefore, there are thousands of combinations. 

Orkambi, which came to market in July 2015, was also a CF-gene targeting drug. It was for people with two copies of the same CF mutation (DeltaF508s). Since there are thousands of mutations, it will take a lot of more research to help the rest of the CF population. While, Orkambi is taking a big step in research for us, did you know it only helps correct the CF-gene around 20%. Which means, it is not a cure. BUT, it is a stepping stone towards a cure! 

Check out the research that is currently being worked on & the medication that has come to market HERE

Now, I have to ask an important question. Can you help me?

It's easy! Just walk one day a year for my team (near where you live)!!! 

Have you heard about the National Family "Great Strides" Teams (NFT)? It's basically a way to connect multiple teams around the country or state & have the money all count under the same team. 

For example: An aunt may live in Texas, but her niece is at College in California, and her best friend lives in IL. But they can all walk at Great Strides Walks near them under the same NFT!

All these family & friends can start their own teams & can create their own individual team names (but be affiliated with the same National Team). Meaning they are all walking with her (as part of her team). It's a very cool concept! I have had a National Family Team for 2 years!  

This year Princeton didn't reach their walk site goal from last year (we had a large team move away, and another team leader already committed that day to something else). BUT, my overall National Family Team raised over $14,000 this year ($4,000 more than last year)! Our National Family Team Website is right HERE!  Check out all the teams & locations: Dekalb, IL, Peoria, IL, Princeton,IL, Champaign, IL & Albuquerque, NM (we even have had a team in Providence, RI before)

Consider a few things:

  • Can you walk 1 day a year for CF as part of our NFT (near where you live)??
  • Can you make a self donation to your walk page? 
  • Can you invite a friends, family, church, or your co-workers to walk with you or donate?
If you can do these 3 things for me (or any of them), let me know! Message me on FB, email me, or comment below with your email! 

I will help you get registered and help you as much as I can! Please join my National Family Team:
Team CF2 (CF Squared)/ the Kunkel Family Team!!! Let me know if you can! 

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