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Alaina Paciulli's Fundraiser:

2016 Disney's Princess Weekend

Alaina's Photo

BENEFITING: EB Research Partnership

ORGANIZER: EB Research Partnership

EVENT: 2016 Disney Princess Half Marathon

EVENT DATE: Feb 19, 2016

Alaina Paciulli

THE STORY:

I know this awesome family and they got this great nephew who has to live with a pretty awful disease called Recessive Dystrophic Epidermolysis Bullosa (EB). John Hudson Dilgen's EB causes his skin to be fragile, to blister and shear off easily. John Hudson's family and the work that they do to support him and help find a cure for EB is inspiring. 

I decided to run a 10k in February to raise funds with Team EBRP. They fund the research that will find the cure for John Hudson's EB. Like my efforts with Team In Training and LLS - if we don't fund the research with fundraising NO ONE ELSE WILL. Not the government, not the hospitals, not the pharmaceutical companies. Family and friends will cure EB.

Here's a short video highlighting the reason why Team EBRP runs and the impact they have had. https://www.youtube.com/watch?v=qz0QeSCWif4

I have a birthday coming up. And instead of buying me a beer or cocktail please consider donating whatever you can to this fundraiser. I know I have asked you all recently to support LLS, and I am still working to raise money for them. But the reality is a harsh one. I am going to keep asking cause we need a cure and new treatments for EB and for cancer. This won't be the last time! We got work to do! 

If you would buy me a beer throw $5 to this great organization. If you were going to buy me a cocktail donate $15. (You know how I like the good stuff.) Cheers!

Thanks for reading this and thanks for always supporting me. 

EB Research Partnership wrote -

EB RESEARCH PARTNERSHIP

We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.

We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.

Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.

Partner with us in our mission to further life-saving research.

http://ebresearch.org/

https://www.youtube.com/watch?v=qz0QeSCWif4

http://www.thedoctorstv.com/videolib/init/10096

 

DONATE

To This Fundraiser

$395

MONEY RAISED
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  • Mary Obert and family

    $20

  • Maura O'Callaghan

    $20

  • Peggy & Patrick Rogan

    $10

  • Laura E

    $10

  • Jessie Fishman

    $25

  • McIntyre Family

    $100

  • Faith Burke

     

  • Diekmans

    $40

  • Lynette McCarthy

    $20

  • The Johnson's

    $50

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79% Raised of $500 Goal

Fundraise for this Campaign

The Team: $25,052 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Karen Thorsen

Amount Raised

$3,596

Fundraiser Title

Lonette Simeone

Amount Raised

$3,530

 

353% Raised of $1,000 Goal

Fundraiser Title

Liz Morano

Amount Raised

$3,502

Fundraiser Title

Patty and Keith Bevacqui

Amount Raised

$1,990

Fundraiser Title

Faye Dilgen

Amount Raised

$1,728

Fundraiser Title

Sally Contreras

Amount Raised

$1,570

Fundraiser Title

MaryAnn Storm

Amount Raised

$1,145

Fundraiser Title

Kalilla Dilgen

Amount Raised

$1,135

Donor Comments

The Johnson's

The Johnson's

DONATION: $50

2 years ago

Lynette McCarthy

Lynette McCarthy

DONATION: $20

2 years ago

Diekmans

Diekmans

DONATION: $40

3 years ago

Faith Burke

Faith Burke

3 years ago

McIntyre Family

McIntyre Family

DONATION: $100

3 years ago

Jessie Fishman

Jessie Fishman

DONATION: $25

3 years ago

Laura E

Laura E

DONATION: $10

3 years ago

Peggy & Patrick Rogan

Peggy & Patrick Rogan

DONATION: $10

Happy Birthday Alaina! Prayers for all effected by this disease. 3 years ago

Maura O'Callaghan

Maura O'Callaghan

DONATION: $20

Love everyone involved in this! So glad you chose this cause, Alaina! 3 years ago

Mary Obert and family

Mary Obert and family

DONATION: $20

I am getting you a beer and a high end cocktail for your birthday + no hangover! Good luck with your cause and Happy Happy Birthday! xoxoxo 3 years ago