Advocacy Opportunities and PKU Studies
I have been so blessed to be a part of so many advocacy opportunities including podcasts, university classes, pku studies and more. Just wanted to give a little update on the things I am doing and how you can get involved to!
First up is PKU YARR or PKU Young Adult Rare Representatives. This group is a community of 16-30 year old young adults with PKU who want to become next generation advocates for PKU and it gives them tools to learn how to be good advocates and provides them with opportunities for advocacy to practice their skills. https://everylifefoundation.org/young-adult-representatives/
I'm currently part of a PKUPHEFREE study where they are trying to get more information on the different mutations of PKU and how that affects the brain and every day life.
I am also currently part of a study with the University of Missouri that is focused on the cognitive skills and mental health of PKU patients.
In the summer I was interviewed for a podcast called Insightful Moments: My Vibe where I was interviewed all about PKU, advancements in PKU, PKU products, and so much more. Find me on Episode 5!: https://www.ptcbio.com/my-vibe-my-voice-is-inspirational-brave-and-empowering/
I was also able to speak to around 100 medical students at OHSU who were studying PKU and was able to provide them with a real-life look at what it is like to have PKU. This was so special to me because I was able to connect with the future generation of doctors and I was able to show them that I am not just a page in a textbook, but I have a life and I accomplish things and I appreciate them so much! They got to try low protein foods and formula and it was so fun to connect with them and meet them. At one point I told them about my blog, and then my watch started going off like crazy. Turns out they were all logging onto my blog to check it out while I was there, it was so funny. Shoutout to OHSU Medical students if you are reading my blog!
There are so many ways to get involved, and I would highly recommend participating in studies if you have PKU. They even have some for caregivers as well! Sign up for the patient registry here to get emails about active PKU Studies that are available. I always get amazon gift cards or straight up cash for participating.
Thank you to all who have allowed me to speak my truth and who care about hearing my story. We may be unseen but we will not be unheard!