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Aimee Griffin's Fundraiser:

Supporting Families - Aicardi-Goutieres Syndrome

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Aimee's Photo
Aimee's Photo
Aimee Griffin

THE STORY:

Our goal is to raise money to aid families who have children suffering from Aicardi-Goutieres syndrome. For me this a project that is very close to my heart, as 2 of the 50 cases diagnosed have been within my family.

Aicardi-Goutieres syndrome is a rare genetic disorder, with only 50 cases diagnosed world wide. It is a type of leukodystrophy and is usually fatal within the first few years. Symptoms of Aicardi-Goutieres Syndrome usually appear within the first six months of life. Aicardi-Goutieres Syndrome is generally either fatal, or else it results in a persistent vegetative state in early childhood.

Aicardi-Goutieres syndrome is inherited. both parents of a child with Aicardi-Goutieres Syndrome carry a single copy of the defective gene responsible for the disease. The parents do not have any symptoms of disease, but with every child they have, there is a ¼ chance that the child will receive two copies of the defective gene, which will result in the disease. The specific genetic defect involved in Aicardi-Goutieres syndrome has not yet been found, so therefore it is not possible to do prenatal testing by this method.

Treatment of Aicardi-Goutieres Syndrome is symptomatic and supportive. This means that you can treat the symptoms, but there is no cure for the disease.

DONATE

To This Fundraiser

$60

MONEY RAISED
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  • Aimee Griffin

    $20

  • Laura Morgan

    $20

  • Anonymous

    $10

  • Dave Thomas

    $10

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Fundraise for this Campaign

The Team: $60 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Aimee Griffin

Amount Raised

$40

Fundraiser Title

Laura Morgan

Amount Raised

$20

Donor Comments

Dave Thomas

Dave Thomas

DONATION: $10

Sorry to hear about your cousins Aimee. Let's hope they can find a cure for this! Dave x 6 years ago

Anonymous

ANONYMOUS

DONATION: $10

6 years ago

Laura Morgan

Laura Morgan

DONATION: $20

6 years ago

Aimee Griffin

Aimee Griffin

DONATION: $20

In memory of Megan and Emily Elton x 6 years ago