Skip to content
amandahuff's profile image - click for profile

Amanda Huff's Fundraiser:

Liam's Race For A Cure

Amanda's Photo
 

Thank You!
February 16, 2016

There aren't enough words to express our gratitude. In less than 12 hours since starting our campaign we have almost met our goal. I can't tell  See more
Amanda Huff

THE STORY:

Angelman Syndrome occurs in one out of 15-20,000 births. It is a rare neuro genetic disorder that causes developmental delays, lack of speech, seizures, among other medical issues. People with AS require life long care. Angelman Syndrome occurs when there is either a deletion or mutation on the maternal side of the 15th chormosome and the severity of the syndrome is largely dependent on the size of the deletion on the chromosome. In Liam's case, he has a small deletion leading to a more mild form of AS. Eric and I are choosing to race for Liam for many reasons. First, there are multiple clinical trials happening this year. Some are for drugs that could help restore some motor function and speech. Another clinical trial is focusing on gene therapy that could actually cure Angelman Syndrome. Researchers have found a way to activate the healthy paternal side of the 15 th chromosome. There has been success in rats already and they will be testing in humans soon. The FDA has given this therapy an Orphan Drug designation which will fast track it even more. A recent timeline estimated that this therapy could be available in the next 7 years, potentially sooner. In other words, there will be a cure in Liam's lifetime. We are asking for your help to support the researchers at the Foundation for Angelman Sydrome Theraputics who are making this cure a reality. The most important reason Eric and I will race is because, until a cure is available, people with Angelman Syndrome cannot. They face challenges that you and I can't even imagine. Normal daily tasks take years for them to master, if they are able to do them at all. Children and adults with AS deserve to have the same opportunities as the rest of us. Knowing that a cure is so close motivates Eric and I to do our part to educate and advocate.

DONATE

To This Fundraiser

$2,001

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Jacob Dunlap

    $25

  • Tyler & Jen Bohannon

     

  • Kenzie

    $25

  • Garth and Sue Anderson

    $50

  • Mike Brodbeck

    $25

  • Mary Joyce

    $25

  • Aunt Bri and Uncle Dustin

    $100

  • hollis dunlap

    $50

  • Tom and Ashlee Clark

    $25

  • Steve and Rachel

    $25

  • Katie and Jon-Paul Mandelburg

     

  • Ben, Jenna, and Thomas Wright

    $50

  • Greg Sheldon

     

  • Rick & Michelle Richards

    $50

  • Grandma Marty

     

  • Bill and Barb Chapman

    $25

  • Sue & Chris Mitchell

    $50

  • Jill and Oliver Schmitt

    $50

  • Finn and Delaney Huff

    $25

  • Andria Baker

     

  • Karen and John Dougherty

    $25

  • Craig & Marilyn Douglas

    $100

  • Jamie and Mark Travis and family

     

  • Carolyn Studley

     

  • Alicia and family

    $25

  • Joyce and Bill Seck

    $50

  • Krystina & Brad Miller

    $25

  • Fritz and Sandee Gadde family

    $25

  • Don & Viki Everhart

    $50

  • Cara Wilhelm

    $25

  • Dangelo Family

     

  • Heidi Barnaby

    $25

  • Mark and Renee Hahn

    $50

  • Gail and Phil Friedrick

     

  • Topher Goggin

    $25

  • Jim Sommerville

    $25

  • Chris, Kendra & Kennedy Brown

    $50

  • Traci Dancer and family

    $25

  • Frank and Kathie Hudecz

    $25

  • Grace and Harper Hancock

     

  • The Lake Family

    $50

  • Eli Hall

    $20

  • G.G. and Papa

    $125

  • Sharie and Tim Kellner

    $25

  • Sue, Chris, Mike, Nic and Milo

    $50

  • Brian and Emily Adams

    $25

  • Ted and Kathy Wilk

    $25

  • Joel, Monique, Taylor & Taryn

     

  •  
  •  
  •  
 

400% Raised of $500 Goal

Fundraise for this Campaign

The Team: $2,001 TOTAL RAISED SO FAR

JOIN THE TEAM

Want to help Fundraise or Volunteer for this amazing Fundraiser? Join the Team

Donor Comments

Joel, Monique, Taylor & Taryn

Joel, Monique, Taylor & Taryn

Sorry we are a little late - mommy brain got the best of me! You both are amazing parents and such an inspiration! 2 years ago

Ted and Kathy Wilk

Ted and Kathy Wilk

DONATION: $25

For Liam 2 years ago

Brian and Emily Adams

Brian and Emily Adams

DONATION: $25

2 years ago

Sue, Chris, Mike, Nic and Milo

Sue, Chris, Mike, Nic and Milo

DONATION: $50

2 years ago

Sharie and Tim Kellner

Sharie and Tim Kellner

DONATION: $25

2 years ago

G.G. and Papa

G.G. and Papa

DONATION: $125

2 years ago

Eli Hall

Eli Hall

DONATION: $20

2 years ago

The Lake Family

The Lake Family

DONATION: $50

We love you!! 2 years ago

Grace and Harper Hancock

Grace and Harper Hancock

2 years ago

Frank and Kathie Hudecz

Frank and Kathie Hudecz

DONATION: $25

2 years ago