Lea Marie Faraone Foundation

UPDATE: Thank you so much for your contributions and generosity! Without all of you, we could not have only reached our $20,000 goal but exceed it as well! In turn, we hope to have the website up VERY soon. In the meantime, let's keep up the momentum and reach our next goal of $30,000!

As we await our website for the Lea Marie Faraone Foundation, we have received questions about where online donations may go. This page was created to aid with this and spread the word of the Lea Marie Faraone Foundation.

The Lea Marie Faraone Foundation has been created in Lea's wishes to carry on her legacy. Lea not only felt passionate about helping those with CF, but also children living with other chronic diseases. While we fight for cures, they may not be available to some and Lea believed in improving all individuals' quality of life while waiting and fighting. The Foundation will continue to support children and individuals living with chronic illness with the same spirit and determination as Lea had.

Currently, funds raised will 100% go towards the complete set-up of the Lea Marie Faraone Foundation. All excess funds with begin to go towards our mission.

If still interested in mailing a contribution, send to C/O Royston, Mueller, McLean, & Reid, LLP, 102 W. Pennsylvania Ave, St. 600, Towson, MD 21204. All checks can be made out to the Lea Marie Faraone Foundation.

Please read Lea's story written by herself below:

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On March 2nd 2017 I received some of the most devastating news regarding my cf. On that very day I learned that the research medication that so many of you have helped keep me on either by advocating for me or donating towards CF research (which I will never be able to thank you for enough), will no longer be available to me despite the fact it has been life changing for me, keeps my CF stable, & allows me to continue to live the life that I love despite having CF. The past few months have been emotionally draining to say the least & bottom line I’m writing this because I need help. I need a new option that keeps me stable to buy me more time until we get to a universal cure for cf.

As many of you know although I look totally healthy majority of the time, I was born with this wonderful disease called cystic fibrosis (cf). *If you know what cf is skip to the following paragraph, however if you do not, cf is a genetic mutation that causes the production of thick/ sticky mucus to accumulate throughout the body, primarily in the lungs & digestive system. This basically means that I have a hard time breathing majority of the time, I have to do numerous treatments everyday to help me breathe, I get frequent lung infections, I can’t digest food without the help of taking numerous pills, and even when I’m totally healthy I always have a gorgeous cough.

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In 2010 I was just finishing my freshmen year of college & I started a research trial for the cf medication, Ataluren, at Johns Hopkins Hospital. Essentially this medication would “cure” or in other words correct one of my cf mutations. Since both of my cf mutations are different this medication would not be a “cure” for me, however it offered the possibility of an easier & more stable life. Over the course of 3 years I took Ataluren every single day 3 times a day. The first year was rough. It made me literally cough up all the mucus that had accumulated in my lungs over the course of 19 years. It was pretty miserable to say the least, however the following 2 years I watched my life transform. Suddenly I was able to focus less on breathing & more on living my life. The mucus in my lungs went from being the consistency of cement to the consistency of water making getting the mucus out almost effortless. I didn’t spend all my time coughing anymore allowing me to have so much more energy to live my life. The constant lung bleeds I had, began to minimize. I required less IV antibiotics & I wasn’t having the digestive issues cf had caused most of my life, which allowed me to gain weight & keep weight on. I signed a contract stating I would receive this medication for 5 years, however towards the end of my 3rd year the trials were abruptly ended & I was taken off of Ataluren without a moments notice.

I had been on Ataluren for so long that I didn’t realize how much it had changed my life until I was taken off of it. When I was taken off of this research medication my lung function plummeted hitting an ultimate low of 19%, which let me tell you translates into feeling like you ran a marathon walking simply a few steps from your bed to the bathroom. My lung bleeds came back worse than ever, ultimately causing my cf team to refer me for a double lung transplant. I required IV antibiotics for months at a time & was to the point I was pretty much living on them. My digestive system failed & completely stopped working. The stability that I had in my life was gone. Because of this major decline I wasn’t able to work, I wasn’t able to be present with my friends & family (even if I was, I wasn’t totally there bc all I was thinking about was my next breath), & I lost more people than I can count in my life because they couldn’t handle what I was going through. I was no longer living, I was just existing.

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After a full year off Ataluren & such a major decline, so many of you donated that another trial was started. However, this time it was at Boston Children’s & required me to travel to Boston to receive this medication. Again, it took a year of being miserable & coughing up a lifetime of mucus before I began to see the same result I did years prior. Ataluren in combination with weekly physical therapy transformed my life. I regained some of my lost lung function, my cf stabilized, my constant lung bleeds subsided, IT REVERSED THE NEED FOR A DOUBLE LUNG TRANSPLANT (can I get a YASS), I haven’t needed IV antibiotics for a lung infection in almost a year, I haven’t been hospitalized in over a year & a half, I am back to working, traveling, & volunteering my time.

This medication has finally been in my system long enough that IT IS WORKING & IMPROVING my life drastically each & everyday. Allowing my life to be good, happy, & stable. So finding out this medication is being ripped out from under me again is absolutely devastating & terrifying. This time myself, my family, my cf doctor, & my entire cf care team at Hopkins are all fighting the drug company because it is clear I need this medication to keep me stable until we get to the next best thing. Which is why I am writing this post. My doctor is 100% confident there is a better research medication that will be available to me next year with the current funds the cf foundation has raised. However, I'm worried that if the drug company doesn’t allow me to stay on Ataluren in the meantime that my health will decline again & I will not qualify for this better research trial.

Please consider donating to my team &/or walking with us. Any donation makes a difference. Thank you so much to those who have read this novel of a post, donate, & walk with us. It means more to me than I can ever express in words. You are not only changing my life but the lives of so many other CFers fighting a tougher battle than myself.

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Unfortunately on December 13, 2018, Lea lost her fight with CF while waiting for a cure.  Please consider donating to help carry on Lea's life and work!

To learn more about Lea, her life and her fight with CF
...check out @leaf7790 & @saltycysters on Instagram. Or listen and watch Lea on her podcasts with Tiffany Rich and Gunnar Esiason at @breathe_in_pod.

Visit and write a message at Lea's Obituary.

Be apart of the celebration of Lea's life at Lea's Funeral 

(funeral was live streamed for infection control purposes. We wanted other CFers who Lea touched from all of the world to join and honor her.)

Donations (0)

  • Anonymous 
    • $100 
    • 3 mos
  • Perry Fong 
    • $100 
    • 5 mos
  • Benjamin Gruver 
    • $30 
    • 5 mos
  • Bridget Cole 
    • $200 
    • 5 mos
  • Thomas Welsch 
    • $30 
    • 5 mos

Organizer 

Leeza Faraone 
Organizer
Towson, MD
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