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Amour Fund's Fundraiser:

Hike to cure CDG

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We met our goal to raise $10,000 to for CDG Research! Thank you!
March 13, 2017

Dear Friends and Family, we have met our goal to raise $10,000 to fund CDG Research! Thank you all for your generous support, we are truly grateful.  See more

BENEFITING: Alpha Epsilon Omega Foundation

EVENT DATE: Mar 11, 2017

Amour Fund

THE STORY:

It is every parent's nightmare to have a child with a diagnosis, especially when it is a life threatening, debilitating disease. Our handsome and brave son, Aram was diagnosed with a rare disorder called PMM2- CDG, shortly after his first birthday. This rare metabolic condition has stolen our son’s ability to walk among creating many other issues.  Please watch the video provided below to learn more about how PMM2-CDG can affect the life of children diagnosed with this disorder.

Congenital Disorders of Glycosylation - PMM2 - CDG

The purpose of this fundraiser is to fund PMM2-CDG research and find a cure for this debilitating disease.

After Aram was diagnosed with this disease, we felt hopeless and could not imagine how life would be for him. We still have many unknowns about Aram’s future. Aram's condition causes various challenges for him. He has gross and fine motor delays due to his condition and at the age of almost 3, can not walk yet.  Due to the effect of this disease, Aram's cerebellum - a part of the brain that controls coordination and movement -  has not developed correctly; therefore, he needs to work really hard to achieve milestones that come naturally to other children. He receives various therapies to help him overcome his challenges. The effects of this disease are not limited to ataxia. A mutation in the PMM2 gene affects all body cells and organs. Most kids with this disorder have issues with their immune system, kidneys, heart, GI, liver, skin, as well as vision. Most kids with PMM2 deficiency are hospitalized often for simple colds and some lose their battle to this horrible disease early in life. 

Due to CDG being an ultra rare disorder, there are not many funds available for research on this rare disease. That is why, Aram and other kids affected by CDG need the help of our community to fund research to understand this disease and to find a cure before it’s too late. Currently, multiple researchers are interested to do research on this rare disorder if there are enough funds. Aram and his friends need our help.  Any amount of donation will be appreciated and help us fund research towards a cure for PMM2-CDG.

Here is a short video produced by Amour Fund that describes PMM2-CDG: 

https://youtu.be/WI8-ZKWgAcU

We aim to share Aram’s struggles and successes to bring awareness about PMM2-CDG. Please follow Aram’s journey on:

https://www.facebook.com/AmourFund/

https://twitter.com/AmourFund

Thanks for being a part of Aram's journey. 

DONATE

To This Fundraiser

$12,095

MONEY RAISED
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  • Haik Kechukyan

    $50

  • Sahak Khacheryan

    $100

  • JBH

    $100

  • Narè and Noy Khosrovian

     

  • Gary Varjabedian

    $100

  • Anonymous

    $50

  • Armen Hovannesian

    $100

  • Anonymous

    $100

  • Vahe & Sharis Sarkissian

    $100

  • Anonymous

    $50

  • Evlin safarian

    $100

  • Tatevik Torossian

    $50

  • Shoushan Tavlian

    $100

  • Linda & Arsine M

    $150

  • Kevin Petrosyan

    $50

  • Karaca Family

    $100

  • GEVORK KALAJIAN

    $200

  • Adrineh Minassian

    $50

  • Ed S

    $100

  • Artur and Magy

    $100

  • Youreka Science

     

  • Lorette

    $50

  • Arman Soultanian

    $50

  • Anonymous

    $25

  • Zetilyan Family

    $100

  • Bajwa Family

    $150

  • Anonymous

    $50

  • Anonymous

     

  • Zetilyan Family

    $1,000

  • Zhamkochyan Family

    $100

  • Jack Avedikian

    $50

  • Patrick Crutcher

    $100

  • Anonymous

     

  • Leo

    $100

  • Vaheh & Meghedi Shirvanian

    $50

  • Anonymous

     

  • Anonymous

    $100

  • Armen Hovannesian

    $100

  • Neal Schleimer

     

  • Ani Asatryan

    $100

  • Aiko

    $200

  • Mariam Bislamyan

    $50

  • Artur Mkrtchyan

    $100

  • Ed Sarkissian

    $50

  • Margaret Bogumian

    $100

  • N. Bajwa

    $150

  • Anonymous

    $50

  • Alexandra Conner

     

  • Haik Alexanians

    $250

  • Hovannes Nalbandyan

    $100

  • Annie Ghazarian

     

  • Rita Abraham

    $50

  • AEO Brother

    $50

  • Tsolair

    $25

  • Alpha Epsilon Omega Foundation Amour Fund

    $100

  • Avo Tngrian

    $50

  • Anonymous

    $25

  • Gayane Brown

    $25

  • Karine Marabyan

    $100

  • Anonymous

     

  • AF

     

  • Eric Bidkhanian

    $50

  • Masis, Sona and Nyree Hounanian

    $100

  • Anonymous

    $25

  • Ani Kenderian

    $50

  • Luiza Paniyan

    $35

  • Tatevik Torossian

    $50

  • Grigor Varuzhanyan

     

  • Hayk Gevorgyan

    $50

  • Onik Ovanesian

    $50

  • Sergey A

     

  • Anonymous

     

  • Eric Chin

    $100

  • Karo Torossian

    $250

  • Patrick Crutcher

    $100

  • David and Kathrin Artunyan

     

  • Armen Keshishian

    $50

  • Tsovinar Zhamkochyan

    $250

  • Kevin Petrosyan

     

  • Jason Dingwell

    $75

  • Vickie Dunn Larrow

    $100

  • Vahe Shahinian

    $20

  • Darin Rokoczy

    $15

  • Faith Ann Walker

    $250

  • Narek Zohrabyan

    $100

  • Nare Garibyan

    $100

  • Thomas Spiglanin

     

  • Sarmen and Talin

    $50

  • Serineh Minasmasihi

    $50

  • Zetilyan Family

    $300

  • Vahe Manuelian

     

  • Anonymous

    $35

  • Azadouhy Zeitlian

    $50

  • Kim Chu

    $100

  • Michael H

     

  • Armen Melkonian

    $1,000

  • Artak Oganesyan

    $100

  • Lala Minassian

    $100

  • Jorj Ismailyan

    $25

  • Alan Medzoyan

    $25

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121% Raised of $10,000 Goal

Fundraise for this Campaign

The Team: $12,095 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Amour Fund

Amount Raised

$11,645

 

116% Raised of $10,000 Goal

Fundraiser Title

Karo Torossian

Amount Raised

$300

Fundraiser Title

Shoushan Tavlian

Amount Raised

$100

Fundraiser Title

William Kulungian

Amount Raised

$50

Donor Comments

Alan Medzoyan

Alan Medzoyan

DONATION: $25

1 year ago

Jorj Ismailyan

Jorj Ismailyan

DONATION: $25

1 year ago

Lala Minassian

Lala Minassian

DONATION: $100

1 year ago

Artak Oganesyan

Artak Oganesyan

DONATION: $100

1 year ago

Armen Melkonian

Armen Melkonian

DONATION: $1,000

1 year ago

Michael H

Michael H

1 year ago

Kim Chu

Kim Chu

DONATION: $100

1 year ago

Azadouhy Zeitlian

Azadouhy Zeitlian

DONATION: $50

1 year ago

Anonymous

ANONYMOUS

DONATION: $35

1 year ago

Vahe Manuelian

Vahe Manuelian

1 year ago