Monday, March 4, 2013

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you!
Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)!

New Treatments And Break Throughs:
As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here!

Also, there are other medicine and research being done to help the other aspects of our CF, pertaining to weight, nutrition, diabetes, liver, bones and joint, etc other issues too. To see the how list of new meds and how fast they are being brought to market check it out Here!

Thank you!
  •  Thank you to my mom and dad, for teaching me how to be independent and strong, while still always being there for me.
  •  Thank you to my sister, for always treating me like a normal sibling, and always having my back. I love you very very much.
  • Thank you to my boyfriend, Andrew. For all the times you have washed my med cups, forced me to do what I needed, made me dinners, and for making me realize how important my health is. You make me try harder and I can't believe how lucky I am to have found you!
  • Thank you to all my doctors, nurses, medical staff, and CF Community. You understand all the medical problems and just get me. I love that.
  •  Thank you to all my high school classmates and friends, I never felt any different, everyone accepted my CF and knew about it. Nobody judged or mistreated me.
  • Thank you, to the community of Princeton, most people in town know about my CF and I love that when I live here and having a coughing fit ina restuarant or the movie theatre, I'm not stared at or scooted away from. That was hard in college. When I ran the 5K in the fall I was nervous people would stare cuz of my heavy breathing and coughing. Instead everyone in town cheered me on as I jogged past them. This is why I love princeton.
  • Thank you to all my close friends, DeMolay, High School, College, Theatre, co-workers, etc. You are all truely amazing. you always help me out when you can and I can count on all of you!

Thank you to everyone who joined me in 2012 for the CF Walk!

This year the walk is June 1, 2013 in Hollowayville (10 mins away from Princeton).  I'm hoping to pull in a huge crowd of family, friends, and community to do this walk! If we can show the CF Foundation how much we support the casue of CURING CF, then in 2014 we will be able to discuss moving the walk site to PRINCETON!!!!

So please, help me make this a reality and join my team for the walk! The walk itself is 2.5 miles long, (you can walk however much you would like). Registration is @8:30 in the morning with walk to follow after.(free breakfast before walk and refreshments after the walk are provided for those who register ahead of time). I can register anyone who wants to join! I just need to know your goal donation/fundraising amount. Some donate $20-$50, others ask their friends to donate and will fundraise up to $100- $200. If you raise $100 you get a GreatStrides CF Walk Shirt. But the amount is completely up to you! Any amount helps! Help me spread word and ask others to join the team!

Join the Facebook Event here: Click here for FACEBOOK EVENT!!

Or if you can't walk, but want to donate to the cause click the GreatStrides Button on the top left side of my blog :-)

Looking forward to seeing how big we can make this team and how much we can raise!

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