A promise to Tia

Amerikanske Alison Michaux Reynolds planlegger å gå Norge på tvers i mars 2020 for å samle inn midler til forskning for å finne en kur for PKU. Her er hennes brev som beskriver motivasjonen for turen;

 

Dear supportive Family and Friends,

I made a promise to Tia that we would not stop fighting until we reach a cure for PKU. In this spirit, I wanted to share with you an important update about my next project.

Tia’s courage, grace and stamina to stay healthy each day has inspired me to dig deep and take on a personal challenge that is meaningful to PKU as well. In March of 2020, I will cross-country ski across Norway, starting on the Norway/Sweden border, reaching the west coast of Norway 9 days later.  I will cover over 140 kilometers with only my skis and my pack on my back.

I have chosen Norway to highlight the heroic work of the late Dr. Asbjørn Følling, the Norwegian biochemist who discovered and named PKU in 1934. This discovery provided the basis for further research and the justification for the newborn screening test that saved Tia’s life!

My goal is to raise as much research funds as possible through the trek so we can cure this disease!  More is happening in PKU research today than any other time in history.  We are at the perfect time now to invest in research to reach a cure.

This brings me to all of you, who have been with us in our efforts to manage and cure PKU, and for this we are eternally grateful. As a rare disease, we are wholly dependent upon friends and family for support. Our progress to date, because of you, is what inspires us to keep going.

Please stand by me and join me as I cross Norway for a cure. Here’s how you can help:

1.           Consider sponsoring me at one of the levels outlined here: https://crossingnorway.com/sponsor/

*100% of the money I raise goes to the NPKUA Fund to advance research.

2.           Ask your company to sponsor the trek.

3.           Help build excitement and spread the word by following my adventure at:

Instagram:  https://www.instagram.com/crossingnorwayforacure/

Facebook: https://www.facebook.com/pg/CrossingNorway/

My Blog: https://crossingnorway.com/blog/

Twitter: https://twitter.com/CrossingNorway

Thank you, as always, for taking the journey with me (without your hat and gloves!). When we find a cure, we can say we did it together.

Forever grateful,

Alison Michaux Reynolds