Update from the CF World

Knowledge is power. Information is liberating. Education is the premise of progress, in every society, in every family – Kofi Annan

Hey Everyone – just wanted to pass on a few updates of where the CF world is as far as advancements, trials, etc. While we were at the Quarterly check up a few weeks ago, we were handed a ton of paperwork and tonight I was finally able to unbury from the mountains of paper (seriously, with everything we have going on – it’s nuts!). Any who, one postcard that is pretty and blue stuck out to me and I started reading it. CLINICAL TRIAL FINDER – sounds interesting so I followed the link and holy crap how cool is this! (www.cff.org/finder). World wide, there are 169 different trials going on. Seriously cool! Everything ranging from Restoring CFTR Function trials to Mucociliary(lung) clearance trials. I honestly read through maybe the first two as I was instantly overwhelmed. :). Check it out to see what your donations are doing to help find a cure.

One thing that I did want to share with you were a few new stories/updates on approvals. FDA approved Symdeko for children 6-11 years old with certain mutations. They are getting closer for Maddox for sure! ( https://investors.vrtx.com/news-releases/news-release-details/fda-approves-symdekor-tezacaftorivacaftor-and-ivacaftor-treat?fbclid=IwAR27DUyIIj9VrOG7pvWSBoDtdAWaAlHfu6mFEJS1m8_lKI80PY8oTQJ5UWc )

While earlier FDA approved Kalydeco for Infants. https://www.cff.org/News/News-Archive/2019/FDA-Approves-Kalydeco-for-Infants-With-CF/

If you are a fan of “So you think you can dance” there was a contestant recently that performed that has CF – Check it out http://www.fox35orlando.com/good-day/413132694-video?sf104343988=1&fbclid=IwAR3o4Lya3ERIuh-zLjFcD1WjAdISVPL_jKWWaXHFyluw7TUuVfR2wkzC7Mc

Here is a story how a rose could raise $40,000 – so cool! https://www.cff.org/News/News-Archive/2019/HM-Insurance-Group-Brings-Life-to-the-65-Roses-Story-at-National-Sales-Conference/

A rose from my garden

Mark your Calendars – we have a lot of cool things happening!

We will be doing the Texas Roadhouse gift cards for sure this year. We are targeting October for the sales and the cards to be delivered in November.

Also, for our followers in WI, Friday August 23, 2019 we are having a CF Awareness night at the Timber Rattler stadium. We will have a table with CF information and our group will be announced on the big screen! If you’re interested – we have free tickets if you wanted to help share the word! I have a few things up my sleeves for give aways for kids and adults.

August (6th or 7th) we will be at Charlie’s Drive In in Hortonville as part of their annual celebration (car shows, kids nights, etc.) We are finalizing all the details of the event but who doesn’t love their root beer floats to help spread the word in the hot days of Summer!

Tomorrow I am meeting with Buffalo Wild Wings here in Appleton to talk more about their Fundraising efforts and I also have a call out to Barnes and Noble to see if we can set up a Book Fair fundraiser as well. I’m doing everything I can to keep the momentum up of creating awareness. Once I have more information on all these events, you will be the first to know. If you can think of anything/anywhere else that would be interested in holding a CF Awareness event, please let me know!

Image result for fight the good fight

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