Together We Can Change The World

As most of you know, Ryan has a metabolic condition known as PKU. For more on his story, read here. Without the Newborn Screen, his PKU would have not been discovered and life as we all know it would be completely different. The National PKU Alliance is conducting an email campaign to gain support at a federal level for legislation regarding PKU.

We are asking all of family and friends to take a few minutes and join this campaign. Through our PKU listserve alone, in 3 days there has been almost 450 letters sent.

Here is more information on the campaign.

The National PKU Alliance is launching the second wave of the email campaign we started in August. As you know, the NPKUA has spent most of the summer educating our Congressional representatives about the importance of PKU legislation. We have provided education to all 100 U.S. Senators and over 55 U.S. Representatives, but we need your help now to help us get the job done! Many of you have already sent letters, made phone calls, and set up visits. This is making a real difference in keeping PKU at the forefront, and we need to keep the pressure on! We need you to contact your two Senators and Representative and tell them you want them to save health care dollars by supporting legislation for PKU. Each email will only take a few minutes and will make a huge difference in moving forward at the national level!

No excuses...I've made it easy for you. Just follow the steps.

1. Click HERE, choose your state and find your Senator/s and a representative for your district.

2. Click contact/email rep.

3. In the subject line or email header write: High Hopes for PKU - Save Healthcare Dollars. (I didn't have an option so I chose Health care/nutrition as my subject)

4. Copy and paste the letter below in the body of the message

5. Edit your letter to make it personal. Please edit the paragraph about Ryan (how you know him, etc)

5. Email me or comment on the blog to let us know you joined the campaign so we can add our tally to the list.

We can't thank you enough. RYAN can't thank you enough!


Dear XXXX (Type your Senator or Representatives Name):

I am writing to ask you to support federal legislation that provides the medical food and formula needed to treat Phenylketonoria (PKU) and other inborn errors of metabolism.

PKU is an inborn error of metabolism that basically means those with PKU have a genetic condition that results in their livers not being able to properly metabolize one amino acid of protein. If left undetected and/or untreated, PKU leads to severe mental retardation and handicap. PKU is a rare disease with about 20,000 people with PKU in the U.S. today. As you know, the 2008 Newborn Screening Saves Lives Act guarantees that every newborn in America is screened for PKU, but there is no federal mandate to provide treatment. A person with PKU, who is treated, lives a normal productive life. They work and pay taxes. Without treatment, they are severely brain damaged, can't work and require costly care. You can save American health care dollars and improve lives by supporting this legislation.

Many PKU families in America find themselves in difficult situations. Their insurance companies refuse to cover or delay delivery of their formula. A formula a person with PKU must have for life. Some states have passed laws requiring health insurance companies to cover PKU formula, PKU specialty foods, or both. But even in the cases where insurance plans are governed by state law, insurance companies make this very difficult. And in the case where an insurance plan is not covered under state law, but under ERISA or other federal law, the insurance companies frequently refuse to provide coverage. Many insurance companies also refuse to cover the medical foods needed by people with PKU. We can't stress enough how these special foods are very expensive. One box of special order pasta or a loaf of bread can cost up to $10. Those with PKU simply cannot live without special medical foods. When people with PKU do not have their medical needs covered by their insurance, or have no insurance coverage, it is of course much more likely that they will not have proper treatment.

The Advocacy Committee of the National PKU Alliance has been working with Senator John Kerry to craft legislation that will support American PKU families by requiring national insurance coverage of PKU food and formula. Senator Kerry has agreed to submit a bill or amendment in the near future. As a direct constituent in your area, I am writing to ask that you co-sponsor and support this bill. This mandate directly effects me, and my friend Ryan. He is an amazing 2 year old boy with PKU. He has the biggest smile and shows so much love to everyone he comes in contact with. He is currently living a healthy normal life because he is able to get treatment for his PKU. Together, we can save his life and the lives of many others like him. Please, let's give every PKU child and adult the opportunity to live a productive and happy life.

Thank you for your valued time and consideration,
*XXXX, sign your name here*