Asbjrn Flling, the biochemist who originally discovered the disease in the 1930s, was Norwegian, and Reynolds, who grew up skiing, knew she wanted to do something physical to raise awareness about PKU. Traversing across the country on skis seemed like a way to pay homage both to Flling and to push herself mentally and physically. (Reynolds and her husband are fronting the costs for the trip themselves, and all funds raised will go towards research.)
This had been such a journey for us over the years and this need to do a physical journey as part of this endurance run for a cure was just calling me, she says. I need [it] as a cathartic [way] of processing this disease.
While Reynolds played soccer in college and has always been active, this journey has required taking her fitness to another level. In February, shell be skiing 16 miles a day for nine days in temperatures that can reach negative 20 degrees Fahrenheit. And shell also be pulling a sled holding around 80 pounds of gear. By the time its done, shell basically have completed the equivalent of eight marathons, Reynolds says.
Some of the biggest dangers of the trip will be hypothermia and severe dehydration, she says. Cross-country skiing is a highly aerobic exercise, so Reynolds will have to stop every hour-and-a-half to drink water, but she can only pause for a minute, or else her sweat will begin to cool and put her at risk of hypothermia.
To train for this, shes taken on a workout routine of epic proportions. Working with Tiffany Nesfield of Nesfield Performance, she does strength training three days a week and endurance training almost every day. A sample day might include a 90-minute Peloton ride followed by a 45-minute run; hiking seven miles with a weighted backpack; or pulling a tire on the C&O Canal for 100 minutes. (The looks I get on the C&O canal are so funny, says Reynolds. Its mostly thumbs-ups.)
Its really changed my life, says Reynolds of her training, which has left her feeling happier and her clothes fitting better. This has gotten me in the best shape of my life, and at 45, you feel like youre turning back the clock a bit.
On the last day of her journey, Reynolds will be joined by her family and other members of the PKU community who will ski to the finish line with her. And while it will certainly be the journey of a lifetime, Reynolds ultimate focus is still on finding a cure for the disease.
Its a hard road, she says. Every morning youre reminded of the quest youre on. Were on a mission, and I think well get there.
Tia is currently trying a new drug recently approved by the FDA, says Reynolds. Shes injecting it once a week as of now, but when she progresses to daily injections, theyll know if its increasing her protein tolerance and eliminating some of the PKU side effects. What it hopefully means for her is a healthier brain and freedom from tight restrictions, says Reynolds.
As of now, Reynolds is most excited about the research surrounding the gene-editing tool CRISPR, which she says shows the biggest promise in the fight against PKU.
I dont think were decades away, were years away from a cure. We just have to keep the funds coming, she says.
When Tia was born, there was only one project aimed at fighting PKU in the works. Today theres over 25, says Reynolds. So its happening. I kind of cant believe it, she says. Theres a drug my daughter is taking because we beat everybody over the head and saidwe have to do this.
To learn more about Alison Reynolds upcoming journey, including how to be a sponsor or donate, visit crossingnorway.com.
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Meet the DC Mom Who's Cross-Country Skiing Across Norway in Freezing Temperatures to Raise Money for Her Daughter's Rare Disease - Washingtonian
