My name is Vijay Maurya, and I am from India. My eldest son, Ansh, was born in March 2010. He had a regular early childhood and did well in his studies. In 2017, my youngest son, Amol, was born.

In 2018, Ansh began to have difficulty in school. He was frequently unwell, and he demonstrated changes in his skin color. We changed ...

On April 12, 2023, Ayden had a catatonic seizure at 8 years old while on vacation with his mother in Utah. He was immediately airlifted to Primary Children’s Hospital in Salt Lake City, where he was put in the care of one of the few renowned specialists in adrenoleukodystrophy. Following an MRI and genetic testing, he was formally diagnosed with the cerebral form of adrenoleukodystrophy ...

I was diagnosed with adrenomyeloneuropathy nine years ago, at the age of 29. Although I have a very extensive family history with every phenotype of ALD/AMN, my diagnosis took a long time since no newborn screening existed in 1986. My earliest symptoms began manifesting themselves in my late teens and early twenties, starting with balance issues and spasticity. I experience virtually ...

My name is Jennifer Arañas, and I am from the Philippines. I'm a single Mom of three kids. My eldest child is 17, the second is 10,  and my youngest is 9.  I worked overseas in South Korea for 11 years to send money home to provide for my family.

In September 2020, my sister-in-law, who is the guardian of my children, told me that my youngest ...

Our journey began on February 24th, 2017, when our beautiful baby boy, Conner, was born. A week later, I received a phone call from a pediatric neurologist from Strong Hospital stating that a newborn screening test had come back positive for adrenoleukodystrophy. She wanted to know if I had any other boys.  I did; I had a seven-year-old, Jayden, born in 2009, and a two-year-old, born in ...