The NPKUA strives to connect the PKU community, raise awareness, and inform on current events. Here you will find ways to become involved in your local PKU community and receive the most up to date information on our national conferences, awareness events and PKU news.

Published Studies

White matter integrity and executive abilities following treatment with tetrahydrobiopterin (BH4) in individuals with phenylketonuria. White DA, Antenor-Dorsey JA, Grange DK, et al. Click here

The effects of tetrahydrobiopterin (BH4) treatment on brain function in individuals with phenylketonuria. Christ SE, Moffitt AJ, Peck D, White DA. Click here

Non-physiological amino acid (NPAA) therapy targeting brain phenylalanine reduction: pilot studies in PAHENU2 mice. Vogel KR, Arning E, Wasek BL, Bottiglieri T, Gibson KMClick here 

Characterization of 2-(methylamino)alkanoic acid capacity to restrict blood-brain phenylalanine transport in Pah enu2 mine: preliminary findings. Vogel KR, Arning E, Wasek BL, Bottiglieri T, Gibson KMClick here

Community Links

There are several social media pages, blogs and other information on the internet for teens and adults living with PKU.  Below, please find information on some of the blogs and sites from active members of the community.

PKU Life Podcast

The PKU Life Podcast with Kevin Alexander features interviews with with people in the PKU community from across the world. Happy listening! Click here.

Thriving With PKU

Laura started a PKU YouTube Channel on PKU Awareness Day. The channel features cooking tutorials and yummy recipes for the PKU diet (and allied disorders!). Enjoy! Click here.


Lillian Rodriguez is the host of #PKUChat and an actor living in NYC who has PKU. Check out her recent interview with the NPKUA Executive Director, Christine Brown, click here. You can also check out Laura's Videos here.

Kevin Alexander is an adult with PKU and a professional videographer. He produces videos and short films about PKU which are available on his website,

PKU Proud

PKU Proud is a blog by Amanda Cosburn who lives in Kamloops BC Canada.  She created her blog in 2012 with the notion to inspire, connect and spread awareness for anyone connected to PKU. Amanda's blog features personal stories, recipes , product reviews, latest news, events, diet information and about Amanda's every day life living with PKU.  The blog can be found at  

After being off-diet for many years, Nicole Merrifield decided in 2011 to begin the process of re-familiarizing herself with the PKU diet in the hopes of eventually starting a family. Building upon her background in marketing and communication, Nicole created the PKU Parlor blog as an online social space for documenting her experience with maternal PKU and as a way to connect with other patients and family members living with PKU. 

Me, You and PKU

Elisa's goal with her blog is to offer: encouragement to commit to the PKU diet and reap the benefits, support in living with PKU through the sharing of recipies and lifestyle tips, and inspire to take a positive outlook and maintain over all health and well being. She loves getting to know other PKUers and encouraging them in their efforts to follow the PKU diet. She finds fulfillment when talking to parents with a new diagnosis and giving them hope that their child can have a normal and wonderful life if they strictly follow this diet. She hopes her blog will provide that encouragement. he blog can be found at

SSA Disability - Applying With PKU

Living with Phenylketonuria (PKU) can put a significant financial strain on a family, as they seek the best treatment, adhere to the strict diet, and take time away from work to care for their loved one. To address this, the Social Security Administration (SSA) provides financial assistance to qualifying individuals in the form of Social Security disabilities. Understanding the application process and eligibility requirements for these benefits with PKU will help you successfully file your claim. Learn more CLICK HERE >



Learn what events are being held in the PKU community or submit an event to be added to the NPKUA calendar.

Join the NPKUA for their 6th biennial PKU Conference July 9-12, 2020 in Vancouver, VA. Click here for more information.