Life, Mental Health, and Rare Disease
Exploring Life, Mental Health, and Rare Disease Through the Lens of ‘Never Give Up: A Rare Disease Podcast’ It’s been...
I'm an adult living with PKU. I'm also a filmmaker, and since 2012 I've been traveling the world as a PKU and newborn screening advocate. I'm a volunteer for the National PKU Alliance, Vice President of the Louisiana Metabolic Disorders Coaltion, and a member of the International Society of Neonatal Screening.
Exploring Life, Mental Health, and Rare Disease Through the Lens of ‘Never Give Up: A Rare Disease Podcast’ It’s been...
Never Give Up: A Rare Disease Podcast Recently I announced my new creative project: “Never Give Up: A Rare Disease...
Let’s talk about rare disease patient advocacy. We can use the word “advocacy” so much that it begins to lose...
In 2003, the world was rocked by the Space Shuttle Columbia disaster, in which the shuttle broke apart upon re-entry...
Voices of Hope, the latest National PKU Alliance Fundraising Video is an inspiring project that aims to raise awareness and...
As a TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease and...
Life is full of ups and downs, and sometimes the downs can feel overwhelming. But even in the darkest of...
Every decision we make, no matter how small, has the potential to create a ripple effect that can change the...
PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for...
In this blog, I share my personal experiences of navigating shame and PKU while exploring topics such as mental health...
I produced my first PKU short documentary, "My PKU Life", in 2011. Since then I've been traveling the world speaking as a PKU & newborn screening advocate and producing videos about PKU.
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