faisalnaqvi's profile image - click for profile

Faisal Naqvi's Fundraiser:

2016 Seattle Rock 'N' Roll Marathon

Faisal's Photo
Faisal's Photo
Faisal's Photo
Faisal's Photo

BENEFITING: EB Research Partnership

ORGANIZER: EB Research Partnership

EVENT DATE: Jun 18, 2016

Faisal Naqvi

THE STORY:

We're the proud parents of a 3.5 year old headstrong little girl named Farah, lovingly referred to as Secret Agent Captain Pirate Mango. She's an astronaut. A queen. An explorer. A conquerer of all that she surveys.

To us, becoming parents to this amazing little girl has been the greatest joy we've ever experienced. What wasn't the greatest was being told, later confirmed with a skin biopsy, that out daughter has EB (or Epidermolysis Bullosa), a genetic disorder that might ravage her skin and cause her pain. No parent in the world wants to hear that. We couldn't hold her at first unsure that it would damage her skin and cause her pain. The anguish and stress that EB causes to those that live and care for those with it is immense.

EB is a rare genetic disorder of the skin that makes one's skin susceptible to tearing, blisters and infection. It's the absense of Keratin or Collagen in the skin that causes the skin to bond and upon touch, friction or injury cause it to blister and tear. Rare as 1 in 20,000 to 50,000 rare.

Plain and simple, EB Research Partnership's goal is find a cure so those like my daughter can live a live free of pain and discomfort. So they don't have to second guess about an activity to partake in it. To be, well, normal functioning human beings. What makes me more excited about this work that Dr. Tolar is doing is the possibility the treatment will not only help those with EB but will also help in the treatment and cure of thousands of other genetic disorders as well.

In other words, I am not doing the half-marathon for just our family. I am doing this for every family who's lives are affected by a genetic disorder.

Together, we can make a difference. Let's do this.

____________________________________________________

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.

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

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

DONATE

To This Fundraiser

$815

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Auntie Heather & Uncle John

     

  • Jolene & Josh Dobbin

    $30

  • Anonymous

     

  • Jean Dobbin

    $25

  • Dane Hendricksen

    $45

  • Renee Jardin

    $100

  • W Scott Simmons

    $25

  • Carlo

    $50

  • Atwoods

     

  • Kevin & Liz Hatcher

    $20

  • Lindmark Family

     

  • Pony

    $20

  • Ellie Bockert Augsburger

    $50

  • Chris A

    $25

  • Anonymous

    $10

  • Mila Webb

    $40

  • Anonymous

     

  • Anonymous

     

  • Kyla & Chip

    $25

  • Mad Maxine

    $25

  •  
  •  
  •  
 

163% Raised of$500 Goal

Fundraise for this Campaign

The Team: $10,469 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Michelle Hall

Amount Raised

$2,894

 

145% Raised of$2,000 Goal

Fundraiser Title

Jen Lightbody

Amount Raised

$2,490

 

83% Raised of$3,000 Goal

Fundraiser Title

Faisal Naqvi

Amount Raised

$815

 

163% Raised of$500 Goal

Fundraiser Title

Heather Fullmer

Amount Raised

$650

 

130% Raised of$500 Goal

Fundraiser Title

Heather Brandling-Bennett

Amount Raised

$600

Fundraiser Title

EB Research Partnership

Amount Raised

$550

Fundraiser Title

Ryan Baker

Amount Raised

$550

Fundraiser Title

kristen schumacher

Amount Raised

$400

Donor Comments

Mad Maxine

Mad Maxine

DONATION: $25

Much love. 3 years ago

Kyla & Chip

Kyla & Chip

DONATION: $25

3 years ago

Anonymous

ANONYMOUS

Run, Fes, Run 3 years ago

Anonymous

ANONYMOUS

Go, Fes! And love to little Mango™. 3 years ago

Mila Webb

Mila Webb

DONATION: $40

3 years ago

Anonymous

ANONYMOUS

DONATION: $10

3 years ago

Chris A

Chris A

DONATION: $25

3 years ago

Ellie Bockert Augsburger

Ellie Bockert Augsburger

DONATION: $50

Every child should be so lucky to have a wonderful father like you, Fes. I hope this helps and that someday soon your daughter can can play and live without fear or pain. Good luck. I hope you raise thousands. 3 years ago

Pony

Pony

DONATION: $20

<3 3 years ago

Lindmark Family

Lindmark Family

We love you guys! Keep killin' it! 3 years ago