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noreen WEIDENER's Fundraiser:

Emma's Energy

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BENEFITING: FOD Family Support Group

EVENT DATE: Jun 14, 2014

noreen WEIDENER

THE STORY:

Hello family and friends
 

This June I am participating in the Franklin Lakes Triathlon, in hopes to raise money for the FOD(fatty oxidation disorder) Support Group.  Due to a loss of a child this special group was formed. They reach out to families, provide information and spread awareness of rare and dwarf metabolic conditions. This organization is very dear to me because my third child Emma has a very rare metabolic condition called TFP.

Emma's story:

Our 15 month old daughter Emma has a very rare metabolic disorder called Trifunctional Protein Deficiency. (TFP) it is part of a group of disorders called FODS- fatty oxidation disorders. She cannot have long chain fat. This is the fat that your body needs to feed your organs and keep you stabilized, so you can fast and have reserve energy when you are ill etc. It's found in all oils, egg yolks and all dairy with fat. She cannot have this fat or use fat stored in her body, so her body is in constant overdrive. Her only source of energy is food. A common cold can knock her down and her body will start using muscle for energy,  which is dangerous and can be life threatening.  Persons with these rare metabolic disorders have to be fed around the clock,  tend to tire quickly, and can have major healthy issues. Emma is currently tube fed and is suffering from Cardio Myopathy, which is a thickening of the heart muscle. I am hoping to raise money for this amazing Group. If you could help out that would be AWESOME. Thank you from the bottom of our hearts.
xo
Noreen and Rob Weidener

DONATE

To This Fundraiser

$2,426

MONEY RAISED
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  • The Scott family

    $25

  • The Carpenter Family!

    $100

  • The Sanborn Family

    $25

  • The Gregoire Family

    $25

  • Claudia Neville

     

  • Arlene Abary

    $30

  • Mike & Peg Ryan

    $50

  • Darren and Jessica Ryan

    $100

  • Nicole Di Pasquale Shema

    $25

  • The Wensell Family

    $25

  • The Boothby's (Coolidge family)

    $25

  • Benz Family

    $50

  • Savina

    $100

  • Pernetti Family

    $25

  • The McCarthy Family xoxo

     

  • The Sthole Family

    $50

  • Sinead Rundell

     

  • The Shapiro Family

    $25

  • Paul and Ann Shansky

    $36

  • The Bumgarner Family

     

  • Kay Donohue

    $25

  • Renee Remy Stefanacci

    $25

  • The Kornfeld Family

    $25

  • Chung Family

    $25

  • The Lagstein's

    $25

  • Rachael Mura

    $25

  • McAuley Family

    $100

  • Marley and Bradley

    $20

  • Sharon & Mike Mulhern

     

  • The Violetti Family

    $25

  • Olivia Weidener

    $100

  • Tracy@Elmwood Dental

    $25

  • David Eidman

    $50

  • Chris@Elmwood Dental

    $25

  • Wyckoff Newcomers and Neighbors

    $250

  • Clare family

     

  • Joanne Ruemler

    $100

  • Tekserve NYC

    $500

  • Louise Swale

    $20

  • The Pelletier Family

    $50

  • Alisa Reuben

    $25

  • Claire Gaeckle

    $25

  • Kerri

    $25

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121% Raised of $2,000 Goal

Fundraise for this Campaign

The Team: $2,426 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

noreen WEIDENER

Amount Raised

$2,426

 

121% Raised of $2,000 Goal

Fundraiser Title

Joanne Ruemler

Amount Raised

$0

Donor Comments

Kerri

Kerri

DONATION: $25

3 years ago

Claire Gaeckle

Claire Gaeckle

DONATION: $25

3 years ago

Alisa Reuben

Alisa Reuben

DONATION: $25

3 years ago

The Pelletier Family

The Pelletier Family

DONATION: $50

3 years ago

Louise Swale

Louise Swale

DONATION: $20

3 years ago

Tekserve NYC

Tekserve NYC

DONATION: $500

3 years ago

Joanne Ruemler

Joanne Ruemler

DONATION: $100

3 years ago

Clare family

Clare family

3 years ago

Wyckoff Newcomers and Neighbors

Wyckoff Newcomers and Neighbors

DONATION: $250

3 years ago

Chris@Elmwood Dental

Chris@Elmwood Dental

DONATION: $25

3 years ago