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Alyssa Romano's Fundraiser:

Cystic Fibrosis Foundation NYC 2017

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Starting strong...
August 08, 2017

And we are live! Special thanks to Mahones for kicking this off. Fundraising events and details to come!   See more
Alyssa Romano

THE STORY:

The constant source of comedic relief for our tight knit group of friends, Bobby has never let his battle with CF interfere with having a great time.  A daily inspiration for me, I will be running the 2017 NYC Marathon to raise money for Bobby and the Cystic Fibrosis Foundation.  

Consider this an early wedding present Bob... and hopefully I’ll be fully recovered by the time we board the plane for Punta Cana to see you and Ali get hitched. Four months should be justtt enough time.

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Below is an excerpt from Forbes coming out in Forbes in September 5, 2017. Fundraising and the work CFF is doing is making an impact:

Technically, Mark Sleeper doesn't know for sure he didn't get the placebo, but nothing in his 27 years of fighting the deadly lung disease cystic fibrosis has made him feel as good as the pill he recently took in a clinical trial. "It was kind of mind-blowing," he says. The energy he usually spent coughing and simply breathing was suddenly available for use in daily living. At first, he stayed up for two days. After 15 days on the treatment, his lung capacity, measured by the amount of air he can breathe out in a second, went from 70% of normal for a man his age to normal. "With what I experienced, I want the drug to be approved, because it was pretty radical," he says. "It was pretty cool to just be on it for 15 days. It's amazing to think of what it would be like to take it for a month."

Study results released in July for three different but similar drug combinations, all developed by Boston's Vertex Pharmaceuticals, back up Sleeper's experience, showing the amount of air patients could exhale in a second increased by ten percentage points or more--an unheard-of amount. There's only one precedent for results like this in CF: another Vertex drug, Kalydeco, approved for use in 6% of the 30,000 Americans with the disorder. The new combinations could bring a similar benefit to almost all cystic fibrosis patients. "There's going to be a paradigm shift in the way we think about treating this disease," says Jeffrey Leiden, Vertex's chief executive. "It's not going to be four different medicines for different subsets of patients, or incremental improvements. It's going to jump to the end. And it's going to be Kalydeco-like efficacy or better, and 90% of the patients getting a single regimen."Longer studies will be needed, but Leiden isn't alone in his excitement. "This is what we dreamed would someday happen," says Francis Collins, who led the team that discovered the CF gene 28 years ago and is now the director of the National Institutes of Health.  

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The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care. The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. 

DONATE

To This Fundraiser

$3,916

MONEY RAISED
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  • Andrew Rizzo

    $2,000

  • Katy M

    $100

  • Christina Fex

    $100

  • Ann and Bob Martinez

    $100

  • JoEllen McKenna

    $50

  • William Gallagher

    $100

  • Leslie Gault and Elise Passante

     

  • Alyssa Romano DEPOSIT

    $100

  • Ali Werner

    $100

  • Anonymous

     

  • Tahra Johnson

    $25

  • Ross Chouler

    $25

  • Michael Jacobson

    $36

  • The Tietjen Family

    $50

  • Colleen Kocher

    $50

  • chris emens

    $100

  • Jennifer Keene

    $50

  • Monica Conforti

    $50

  • Lisa Murray

    $100

  • Maggie Clifford

     

  • Anonymous

    $100

  • Kathryn Thiel

    $25

  • Ben Hankinson

    $50

  • Tim Scanlan

    $100

  • Teddy Bloch

    $25

  • Jenn Masuda

    $25

  • Karen OMahony Speidell

    $50

  • Paul & Joan Kocher

    $50

  • Julie Rapinat

    $50

  • Morgan Leuprecht

    $50

  • Sascha Malas

    $25

  • Connie Darnulc

    $50

  • Amanda Maguire & Brian Vassi

    $50

  • The Langs

    $50

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78% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $73,010 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

TJ Olesczuk

Amount Raised

$8,485

 

212% Raised of $4,000 Goal

Fundraiser Title

Austin Rynne

Amount Raised

$4,200

Fundraiser Title

karen maciariello

Amount Raised

$4,125

 

103% Raised of $4,000 Goal

Fundraiser Title

Alyssa Romano

Amount Raised

$3,916

 

78% Raised of $5,000 Goal

Fundraiser Title

Gayle Smith

Amount Raised

$3,855

 

96% Raised of $4,000 Goal

Fundraiser Title

Shannon Connolly

Amount Raised

$3,710

 

93% Raised of $4,000 Goal

Fundraiser Title

Debra Capurso

Amount Raised

$3,585

 

90% Raised of $4,000 Goal

Fundraiser Title

Eileen McConville

Amount Raised

$3,560

 

89% Raised of $4,000 Goal

Donor Comments

The Langs

The Langs

DONATION: $50

11 hours ago

Amanda Maguire & Brian Vassi

Amanda Maguire & Brian Vassi

DONATION: $50

2 days ago

Connie Darnulc

Connie Darnulc

DONATION: $50

4 days ago

Sascha Malas

Sascha Malas

DONATION: $25

2 weeks ago

Morgan Leuprecht

Morgan Leuprecht

DONATION: $50

2 weeks ago

Julie Rapinat

Julie Rapinat

DONATION: $50

3 weeks ago

Paul & Joan Kocher

Paul & Joan Kocher

DONATION: $50

3 weeks ago

Karen OMahony Speidell

Karen OMahony Speidell

DONATION: $50

3 weeks ago

Jenn Masuda

Jenn Masuda

DONATION: $25

3 weeks ago

Teddy Bloch

Teddy Bloch

DONATION: $25

3 weeks ago