May is National PKU Awareness Month!
April 16, 2016
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: Tough Mudder Virginia 2016
EVENT DATE: Jun 11, 2016
“Out of the mountain of despair, a stone of hope.” – MLK, Jr. These famous words to live by capture the essence of Tough Mudder: “a set of values lived out on the course, and in everyday life.” And, according to the New York Times, “the idea of Tough Mudder is not to win…but to have a story to tell.
What is my story? PKU! "This disorder thus exemplifies many so-called molecular diseases, and the rewards that may accrue from the ceaseless probing of these points on the far frontiers of modern biomedical research.”– NY Times 1961. Today, PKU (phenylketonuria) is considered one of the most significant breakthroughs in the history of biochemical genetics because the disease manifestations (neurological deterioration, mental illness, and psychological disorders) can virtually be eliminated by treatment with a restricted, lifelong special diet with provision of medical foods. I was spared a lifetime of institutional care thanks to early diagnosis and early and continuous treatment. I am going to Tough Mudder, Virginia to show the world how much I value treatment that saved my life and my children’s lives and to awaken the social conscience of the nation. Medical research is hope – hope for progress, hope for improving lives, and hope for a cure. While there is no cure for PKU, my life is a testimony to the imperative of treatment and my values. Please support me and my fearless team efforts as we Get Down and Dirty to Make a Difference for PKU! Follow me down the heritage trail - to Tough Mudder Virginia - on a course of civil rights and civic duty - and join the camaraderie with championing efforts for A great cause: • Awareness for PKU • Amplify the patient voice in research and development • Attract funding for medical foods and drug studies, or just Advocate! I dare to dream. I have vision. I have hope for PKU medical research as a national priority agenda and important public health policy issue. Tough Mudder is about forging a common ground for a great purpose, and I am fearless for medical foods and innovative therapies as fundamental to our core, American ideals. Treatment for me translates to freedom - freedom to live life with opportunity and extend this to all through a model of service. I am proud to amplify the patient voice on a different kind of battleground. In keeping with NORD’s motto, “Alone We Are Rare. Together We Are Strong,” I am Tough Mudder and willing to Say it loud, and Say it proud – PKU is a story to tell! Your generous donations help support NORD’s Research Grant Program related to PKU and will help translate scientific discovery into meaningful outcomes and delivery of innovative therapies all PKU patients deserve and need. Thank you in advance for helping us make a difference through Tough Mudder! Find me at www.pkupioneer.com