Rachel's NORD 7,000 Mile Rare Movement

This February, I am joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, 95% of them have no treatment. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.

I have been involved with Running For Rare, running the Providence Half Marathon in May 2017.  I run for rare because my 2 year old has PKU. We have been so fortunate in that her PKU was diagnosed through newborn screening, we were very quickly referred to a metabolic clinic in Chapel Hill, NC, under 3 hours from our home. The medical team there helps us manage her low protein diet through a special formula that is covered by the state of South Carolina where we currently live. We do weekly heel pricks to monitor her Phenylalanine levels to ensure that her growth and development is on track. We are grateful for NORD, the rare disease community and all who we have met in person and through social media to help support us on this journey.

My goal for February is 30 miles, which may not seem significant. However, I am also currently pregnant with our baby boy who we know has another rare disease, a urea cycle disorder called OTC. As we learn more about this condition and prepare for his upcoming arrival, my exercise has slowed down a bit. I want to participate in this effort and raise awareness as much as I can. I know it won't be the number of miles that counts for me, but for the awareness it may bring.

Thanks for reading!

Rachel