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Help for Amino Acid Disorders

Help for Amino Acid Disorders

23 signatures 27 to reach 50
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Terri K. signed
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Ciara M. signed
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Travis C. signed
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Manjeet K. signed
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Raheleh T. signed
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Michelle v. signed
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Nancy K. signed
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Mary M. signed
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Christine S. signed
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Evelyn B. signed
Started by Anonymous 22 years, 1 month ago
This petition is to get help with low protein foods and formulas for persons with an Amino Acid Disorder; Phenylketonuria(PKU), Organic Acidemas, Maple yrup Urine Disease, etc. These disorders are genetic and are picked up at birth through the state\'s NewBorn Screening Test, these tests were started in the 1960\'s. There are hundreds of adults and children with one of these disorders. A person with any one of these disorders must sustain a very strict low protein diet for LIFE. If the Diet is not maintained the outcome will result in mental retardation as well as behavior problems, learning disabilities, and neurological problems. The extreme cost of these low protein products is a problem. It is $10.00 (ten) for a loaf of low protein bread, as well as for low protein pasta, and low protein cheeses. Not all states in the US have mandated insurance companies to pay for these products, for most there is no help. SOMETHING MUST BE DONE NOW! This petition will be sent to as may representatives as it will take to ensure all with these disorders have help to live healthy lives.

Updates

June 30, 2004

I spent the entire afternoon reading through the new stories in the comments and it is just heartbreaking to see how many families are struggling to afford a single loaf of bread. I am currently trying to figure out the best way to package these personal accounts for the legislators because the data alone just does not capture the reality of living with these disorders every single day.

June 30, 2004

I keep staring at the screen and honestly just feeling a bit overwhelmed because so many people actually care about this food accessibility issue. It makes me think about those ten dollar loaves of bread and the thousands of families struggling to keep things stable every week while hoping someone listens to us.

3 Comments

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Jessica Reynolds
22 years ago Featured

its so hard to find affordable options that actually taste good. we need better coverage for these special needs. thank you for starting this.

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Sarah Murphy
22 years ago Featured

My nephew has PKU and the grocery bills are just insane. Families shouldnt have to choose between food and health. Please help us.

M
Mike Hill
22 years ago Featured

TEN DOLLARS FOR BREAD?? Thats highway robbery. These people need to eat to survive. Fix this now.

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