Speedy's NORD 7,000 Mile Rare Movement: Team P.K.U. Matters Society

My name is Dean “Speedy” Baker and this February, I am joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. I run to honor my wife, Angie and the other PKU patients and families I have met in our almost 16 years of marriage. When I met Angie, I did not know what PKU was or what that meant, I just knew I wanted to I wanted to marry her and I needed her in my life. We married within 6 months of meeting and we’ve never left each other’s side. I was beside her hospital bed when she struggled with the effects of being “off diet” and by her side when she decided to enter the Peg-Pal Study to help further advancements in PKU treatment and I stand with her as she embarks on her journey to further awareness for rare diseases from her competing/and reign as Mrs. Kansas Plus America 2017 & 2018 to her involvement 7,000 Mile Rare Movement.

I also run to honor my father, Joe, that we lost to rare disease ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s Disease 6 years ago this last January 1st. He died within 4 months of his diagnosis after 1st being misdiagnosed with parkinson’s disease. My father taught me to be the kind of father & husband I strive to be every day. He never met an enemy and everyone was his friend.

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.