My
PKU Story
PKU (Phenylketonuria) is an inborn error of metabolism resulting in hindered metabolism of phenylalanine (building-block of protein). Affecting only 1 in 15,000, discover how I manage my PKU.
Rather than reading about PKU, I realized the most effective way to educate people was by letting them into the life of someone with the condition. The following is a short documentary about being a dancer with PKU. It was produced with the support of the PKU community.
No Limits: Living with PKU
Film featured in...
1. National PKU Alliance September Newsletter
2. Every Life Foundation August Newsletter
More About PKU
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NIH-PKU INFO
Shown on the left is our New Jersey teen advocacy team speaking to Jordyn Ramsey (bottom left), a legislative correspondent for Senator Menendez.
Shown on the left is me standing with Tom Kean Jr., who represents New Jersey's 7th Congressional District.
February 2024
Rare Disease Week on Capital Hill
This advocacy week was incredible. I had the chance to advocate co-sponsorship of the Medical Nutrition Equity Act (H.R. 6982) and joining the Rare Disease Congressional Causes to representatives including Senator Booker, Senator Menendez, Congressman Kean, and Congressman Norcross. I also had the opportunity to finally meet some of my fellow advocates in-person, and we were able to discuss new ideas in the rare disease advocacy space.
Advocacy
October 2020
Tony Dovolani GOLF for Special Needs Children
As a young child, I wasn't ready to use traditional forms of advocacy to help the PKU community, so instead, I used my dancing. I was lucky to be invited by Tony Dovolani from Dancing with the Stars to raise money for children with special needs.
March 2022
Young Adult Rare Representative
Looking to join a broader, national coalition of rare disease advocates I became a Young Adult Rare Representative. We meet virtually every month to discuss new legislation, advocacy efforts and share our contributions to the movement.
June 2022
Medical Nutrition Equity Act
Becoming more confident in my story, I realized the best way to improve the lives of other members of the PKU community was through legislative change. I discovered the Medical Nutrition Equity Act, which would increase coverage for medically necessary dietary products, including the Phenylalanine-free protein powder that I use. From there, I urged members of Congress in my state to co-sponsor the Act. Here is one letter I wrote: Co-Sponsorship Letter
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February 2023
Rare Disease Week on Capital Hill
I attended the Rare Disease Week Capital Hill meeting virtually, giving me the chance to learn more about the current legislative bills supported by the Rare Disease Community. Specifically, I was introduced to the Rare Disease Caucus, a bipartisan caucus that works to advance legislation and education of rare diseases. It became another goal of mine to promote participation in the caucus.
July 2023
Virtual Youth and Teen Advocacy Day
After several team training webinars, my fellow state advocates and I were prepared to share our stories and advocate to representatives of our New Jersey Congress members. Our overarching goal was to promote joining the Rare Disease Caucus. Here is a link to my ask.
August 2023
Rare Across America 2023
Rare Across America is the most exciting advocacy event of the year, especially because I had the chance to meet with my state Congress members in-person!
September 2023
National PKU Alliance Fall Donor Appeal Letter
Inspired by my documentary No Limits: Living with PKU, the National PKU Alliance selected me to share my message to their donor base. It can be seen below.
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