Category: Blog

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Medical and Dietary Guidelines for PKU Treatment

Added by 3 years ago

2.84K Views0 Comments

I received an email from the National PKU Alliance with an important announcement. The National PKU Alliance and the Canadian PKU and Allied Disorders have announced the following medical and dietary guidelines for th...

Never Give Up

Added by 4 years ago

1.64K Views0 Comments

After yet another semester of abysmal grades, I was ready to throw in the towel. I was on the phone with my Dad, and he was trying to talk me out of making the biggest mistake of my life. My college career hadn't ...

Global Genes Project: A Song For Katy

Added by 4 years ago

1.47K Views0 Comments

If you're active on social media you know there are some great organizations out there that represent the rare disease community. The Global Genes Project is one of them. I connected with them last year, and was h...

Social Media & Patient Advocacy

Added by 4 years ago

2.04K Views2 Comments

How important is social media to you? How often do you use it in your PKU lifestyle? I posed these questions on my Facebook Page a few weeks ago. Well, earlier this week I spoke about Social Media and Patient Advo...

Make a Difference

Added by 4 years ago

880 Views0 Comments

Sao Paulo, Brazil is massive. I looked out over the city a few days ago just before my plane landed. And honestly, massive barely describes it. The Sao Paulo metro area is about 3,000 square miles with a population of...

Why Am I Doing This?

Added by 4 years ago

948 Views0 Comments

So I've got a few hours before my flight to Brazil. I'm traveling to Curitiba, Brazil to speak at a newborn screening symposium. It's going to be an incredible experience, and an opportunity to screen my film "My ...

Kindness Rocks

Added by 4 years ago

1.16K Views0 Comments

Friends, I'm an easy-going person and rarely post anything like this. But I've seen some highly offensive posts on my Facebook recently, so I chose to respond to them. I've had it with the use of "mentally reta...

One Step At A Time

Added by 4 years ago

832 Views0 Comments

One moment in time has captured my attention for these last few years. I watched a man die. Standing a few hundred feet away, watching through my TV camera lens, I watched as paramedics tried to save a man who had...

An Open Letter to the Department of Health and Human Services

Added by 4 years ago

2.02K Views1 Comments

A few months ago I posted this open letter to the Department of Health and Human Services. At the time, we were lobbying to get metabolic formula and low protein foods included as an essential benefit as part of t...

In Defense of Newborn Screening

Added by 4 years ago

830 Views0 Comments

OK, I'm just going to be real with you. I've tried to sit down and write this particular entry numerous times... But every time instead of clicking "Publish" when I'm finished I clicked "Delete" instead. It just would...

Newborn Screening Saved My Life

Added by 5 years ago

775 Views0 Comments

"Where would we be without newborn screening?" I posed that rhetorical question on my Facebook page a few weeks ago. The truth is I can't even begin to imagine where I would be today were it not for newborn screen...

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