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Ray Hugill Memorial's Fundraiser:

Hope for Kleefstra

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Ray Hugill Memorial

THE STORY:

Gwen Kris Clapp wrote -

Sydney is a beautiful, vibrant, 7 year old girl that has faced challenges her whole life, and no one could tell us why until recently. She was diagnosed with autism at 15 months old, but we felt that there had to be another diagnosis out there. After baffling 6 different geneticists for 6 years, we finally have the answer, Kleefstra Syndrome.

Kleefstra Syndrome is rare genetic condition caused by a mutation or a deletion in the EHMT1 gene on Chromosome 9. People tell us that we are fortunate that she seems to be mildly effected, but what they do not understand is the devastating future that may lie ahead for Sydney. With Sydney’s type of EHMT1 mutation, research has shown it to be neurodegenerative in adolescents. Currently Sydney can run, speak in 10 word sentences, knows 50+ sight words, is close to reading, can write and is in mainstream kindergarten. All of these achievements, which come naturally to most children, are for Sydney a daily struggle and celebration. She has acquired these skills with great effort and 40+ hours of therapy a week, for years. One would not know she has a serious underlying condition that threatens to take her future away, and she may revert to being a toddler or develop unmanageable behavior problems.

What gives me hope as a parent is the work of Dr. Kleefstra, her research has shown in fruit flies that this intellectual disabilty is stoppable and possibly reversible given the right drug compound. So, once again I am told I must wait for the science to catch up. But Sydney does not have time on her side. She is 7 and adolescent's is around the corner, making time of the essence.

GeneSpark.org has been founded by other parents of children with Kleefstra Syndrome and together we are taking on the fight to save our children in this race against time. Science is on the brink of a discovery to treat Kleefstra but given that this is a rare syndrome, with less than 300 people known worldwide, funding sources are very limited, unless we raise the money. GeneSpark has proposals from top medical institutions standing by, just waiting for funding to find the treatment for Kleefstra Syndrome. The hope is that there is already a drug compound out there that exists, allowing for rapid drug trials for the treatment of Kleefstra. Please help us by donating to GeneSpark.org, so that we may give our children the future that they deserve.

For every $2500 raised Sydney will post a new dance. Thank you in advance for helping Sydney do what she loves for many years to come.

Donations are directed to GeneSpark.org through CAF America, who will provide an email tax receipt for donations.

DONATE

To This Fundraiser

$1,420

MONEY RAISED
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  • Anonymous

     

  • Dustin & Lisa Sides

    $25

  • Debra Jensen

    $25

  • Anonymous

    $100

  • Ray Hugill Sr. Memorial

    $795

  • Ray Hugill Sr. Memorial

    $100

  • Ray Hugill Sr. Memorial

    $25

  • Kevin & Diana Davis

    $250

  • Deb and Mark Arabadjief

    $50

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Fundraise for this Campaign

The Team: $8,780 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Gwen Kris Clapp

Amount Raised

$6,860

 

34% Raised of$20,000 Goal

Fundraiser Title

Ray Hugill Memorial

Amount Raised

$1,420

Fundraiser Title

Barb Hugill

Amount Raised

$500

Donor Comments

Deb and Mark Arabadjief

Deb and Mark Arabadjief

DONATION: $50

In memory of Ray Hugill 3 years ago

Kevin & Diana Davis

Kevin & Diana Davis

DONATION: $250

Dear, sweet Uncle Ray! He was always so kind and funny. We always enjoyed visiting him and wished we could have made more trips to see him. He remains in our thoughts and his family remains in our prayers. 3 years ago

Ray Hugill Sr. Memorial

Ray Hugill Sr. Memorial

DONATION: $25

Ray Hugill Memorial 3 years ago

Ray Hugill Sr. Memorial

Ray Hugill Sr. Memorial

DONATION: $100

3 years ago

Ray Hugill Sr. Memorial

Ray Hugill Sr. Memorial

DONATION: $795

3 years ago

Anonymous

Anonymous

DONATION: $100

In Memory of Ray Hugill 3 years ago

Debra Jensen

Debra Jensen

DONATION: $25

3 years ago

Dustin & Lisa Sides

Dustin & Lisa Sides

DONATION: $25

3 years ago

Anonymous

ANONYMOUS

In memory of Raymond Hugill Sr. 3 years ago