The following is from an email I received this evening via my Aunt about PKU (Phenylketonuria) that I’d encourage you to read – it’s a great summary of the disease as well as offers a quick and easy way to help promote awareness and offer support:

PKU is a rare inherited metabolic disorder. PKU has an incidence of about 1:10,000 births in the US, which means about one case per year in Maine. Those with PKU are lacking an enzyme needed to break down the amino acid phenylalanine which is found in all proteins. If untreated, phenylalanine builds up in the bloodstream and causes brain damage; before newborn screening, PKU was a major cause of mental retardation.

Thankfully today, all babies in the US are screened through state mandated Newborn Screening Programs. Treatment requires following a severely restricted low protein diet – avoiding anything one would usually consider a source of protein – dairy, meat, poultry, fish, legumes, soy as well as products made with regular flour and pasta.

You might ask, what CAN be eaten? The answer is measured amounts of most fruits and vegetables, fats, sugars and specially formulated low protein pastas and baked goods that are ordered from specialty companies. For the protein needed for growth and development, a metabolic formula containing all the essential amino acids except for phenylalanine is drunk.

As the need for family education and support became clear, combined with the good fortune of being on the receiving end of a grant from The Children’s Hospital in Boston, in 1994 the first Family Camping Weekend was held for families raising a child with PKU. Educational programs for parents and children, cooking classes and support activities filled the weekend.

These annual weekends have continued over the years providing needed support and education to families. The problem is that over the years, funding has been more and more difficult to secure. For the past two years, fundraising efforts have been entirely spearheaded by families. The commitment is to provide this opportunity for every family whether or not they have the ability to pay.

To that end, Laurie, a Pampered Chef consultant, who also has a teenage daughter with PKU, has organized this fundraiser.

If you want to participate, you can do so easily online. Please follow these easy steps:

· Go to Laurie’s website: www.pamperedchef.biz/lauried
· Select “Order Products”
· Enter “Maine PKU & AD” as the organization
· Place order – all orders must be placed by 11/6