We helped form X out ALD in 2020 after Niko was diagnosed with adrenoleukodystrophy via newborn screening and his cousin Ira was diagnosed thereafter. There is not enough funding for rare disease research and we wanted to create a platform to raise awareness and funding for ALD, which can be deadly if not detected and treated at the earliest signs of disease. We are incredibly fortunate to have received the diagnosis when we did. Both boys remain aysmptomatic and continue biannual brain MRIs and bloodwork to test for any signs of cerebral disease or adrenal insufficiency. It is not lost on us that one of the leading centers in the world for monitoring and treatment of ALD is in our backyard.
Both boys are healthy and active and we couldn't ask for much more. Niko is ready to roll into another summer of flag football, soccer, tennis, golf, t-ball and martial arts! When he’s not outdoors playing sports, chances are you will find him playing with hot wheels cars or monster trucks. He is usually happiest with his sidekicks, Elise, Otis and/or his cousins! He will soon be a kindergarten graduate and has had the time of his life in school. Niko is bright, athletic, full of life (and attitude at times) and above all else, healthy.
Ira is a fourth grader who spends most of his free time playing pick-up games of baseball, basketball and football with his neighborhood friends or playing pitcher, shortstop and second base for his baseball team. On rainy days, you will most likely find him watching the Minnesota Twins and Timberwolves on TV, shooting indoor hoops, or pounding out his favorite songs on the piano.
Thank you so much for supporting research so these boys can continue to just be regular kids and we can help provide better outcomes for children with this disease 💙
