Monday, February 24, 2014

Tis the Season!

What Season?


Great Strides Season!!!! The Cystic Fibrosis Walks have started for the year! Each year I choose which events I will attend way in advance, so if any family or friends want to join me they are more than welcome! 


This year I'm doing: 

  1. Champaign- May 3rd
  2. Naperville, May 17th
  3. PRINCETON- that's right we are having one!!! June 28th
  4. Peoria Heights- October 4th
I'm doing multiple cities, because I have friends and family in these areas. So please consider doing a walk if it is near you! Contact me with any questions! Also read below to really understand why I love these walks!!!!


Why walk at a Great Strides Walk? 1.) It will make me smile... Okay, seriously: 1.) Shows people we are fighting for CF and helps raise awareness! Lots of people still don't know what Cystic Fibrosis is! 2.) the money raised goes towards research for a cure! In fact: New research is being done and approved everyday! Just this week the Cystic Fibrosis Foundation posted:

  "The U.S Food and drug Administration announced today it has approved Kalydeco™ to treat people ages 6 and older who have one of eight additional cystic fibrosis mutations.
With the announcement today, Kalydeco is now approved for people with the following mutations: G551D, G178R, S549N, S549R, G551S, G1244E, S1251N, S1255P and G1349D. In 2012, the FDA approved Kalydeco for use in people with the G551D mutation ages 6 and older. In the United States, approximately 150 people have one of the additional eight mutations for which Kalydeco is now approved. Kalydeco, a breakthrough therapy, is the first drug to treat the underlying cause of cystic fibrosis."

That means 150 more people with CF in the U.S will benefit from this new treatment. I have 2 copies of Delta F508. Want to know about research that benefits me?


"The VX-809 +ivacaftor is the clinical trial in process that would help me!This trial is testing VX-809 in combination with ivacaftor. VX-809 is a new compound, called a "corrector," designed to move defective CFTR protein to the proper place in the airway cell membrane and improve its function as a chloride channel. It is for people  with my mutations, 2 copies of DeltaF508! It is currently in Phase 3" -cff.org 

Read more about my mutation's drug's progressMy drug's progess- check it out here!

This is why CF Walks are sooo helpful! Great Strides is the single largest CF fundraiser held throughout the year, with hundreds of walks available to choose from. Everyone is invited to walk. 

Goal Amounts- why set a goal and how much should I put?
The Goal amount someone sets is up to them. You can change it to whatever you believe is obtainable! I've had team members raise near $500 on their own, and I have many walkers who always donate $20- $30 at the walk. It all helps, every dollar hekps! No goal is too big or small. Set it at what you can do! Don't forget, if you reach $100 you get a great strides Shirt (Each year, the design is slightly different).. Also, did you know you can get prizes... Look at the prizes HERE! 

How do I raise money?
You don't have to raise a lot of money, you can just make your donation and walk. However, feel free to raise money. Most teammates have told me they had lots of their family, friends, neighbors, and co-workers donate to them! Also, you have an online fundraising page you can make once you register to post on facebook and twitter. If anyone needs help setting it up or registering, please let me know. I've done other teammates for them in the past. It's no problem for me.

Please Register
If you register and find out later on you can't make it, whatever money you did raise just give it to me or put into your account on your fundraising page and don't worry stuff happens. However, I'd rather have more people in the head count than have more people show up then what I ordered food for. I'm going to supply some type of food. I know there will be cake, drinks, etc. They may even be a provided sandwich box lunch. But this is only available for those who registered before I place the orders! So if you are considering doing the walk, consider signing up so I count in the our headcount!

Why Princeton?
It's my hometown, I've always wanted to host one here! I'm so excited to have all my family and friends be able to attend a walk without traveling for it! 

What do I need, Can you help?
I need to ask a business to donate bottled water, sandwiches, chips. Also I'd love to have a couple volunteers to pass out shirts and a couple volunteers to host a fun booth. Can you face paint? Do you do Caricature drawings? Let me know if you have a good idea and can help out! I also need people to help set up and tear down afterwards. Please let me know what you can do and I will start a document with all the volunteers! Thank you so much! 

For details about Princeton's Walk: June 28, 2014. Click here to find out times, details about the Princeton Walk!

And here is the registration link for Princeton's: Register HERE, just click "Join Our Team"

Hope this helps everyone understand the Walks and registration process better! Look forward to seeing who all walks this year and how much we can raise TOWARDS A CURE! Much Love, Cheriz

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