Jennifer Payne_The Patient Voice est.1973
MAY IS NATIONAL PKU AWARENESS MONTH!
Jennifer Payne is an American revolutionary, rare disease patient and advocate, with education background in pharmacy, policy, and science. She has drawn upon her rich, political American heritage in winning a first-ever historic right against the US federal government on behalf of PKU patients and the medically disenfranchised. Jennifer has been instrumental in helping PKU patients adversely impacted by access challenges in securing coverage for treatment with medical foods for inborn errors and fighting a systematic framework that was unsafe by design and intrinsically flawed since its inception. Dietary treatment with provision of medical foods for PKU has been the gold standard therapy, saving lives for over 60 years from devastating and disabling disease consequences that are otherwise 100% preventable thanks to early detection by newborn screening, and early and continuous treatment - for life. Medical foods is the greatest invention ever in the history of biochemical genetics and the lifesaving potential, preventative properties, use in the treatment and mitigation of PKU and similar inborn errors is a story worth fighting for.
PKU-Who? "Denying the necessary treatment to these individuals is denying them life, liberty, and the pursuit of happiness." To view a video on PKU and medical foods equity, click here:
For more on how to unleash your potential, unique talents and gifts, please feel free to navigate my website and/or access the online submission form here, Join Me!
Let's continue the dialogue, Tweet me @PKU_Renegade or find me on Facebook and Keep the momentum going!
Thanks for exploring and wishing you safe travels in your clinical odyssey, from one passionate advocate, patient, voice, mother, motivational speaker, guest lecturer, policy analyst, political activist, pharmacist, author and songwriter, fighter.
***Please view special tribute below to my pharmacy family for playing out the values for PKU treatment at Tough Mudder Virginia 2016 obstacle course! Thank you so much for your support and spreading awareness***
#RareAthletes for #RareDiseases accepting contributions now until the end of time, your support helps fund PKU research with NORD as charitable organization.