Noticing a change in his gait while he was still in elementary school, Ryan Alam’s parents took him to multiple doctors, therapists and trainers to try and figure out what was happening. The family first thought he had cerebral palsy. But over the years, his disability got worse. Then in 2019, doctors at Children’s National Hospital diagnosed him with a very rare disease.
Ryan has neurodegeneration with brain iron accumulation, or NBIA. Of the different types of NBIA, he has mitochondrial-membrane protein-associated neurodegeneration, or MPAN, a disease in which a surplus of iron accumulates in the brain and causes it to deteriorate.
There is currently no treatment or cure for MPAN.
“This is a very rare neurodegenerative disease which impacts a person’s ability to walk, coordinate their movements and speak clearly,” said Jamie Fraser, M.D., Ph.D.
, a medical and biochemical geneticist and director of the Myelin Disorders Program
at Children’s National.
Tuba Alam, Ryan’s mom, says that despite his condition, his goal in life is to help others like him find a cure so that they can live a full life.
“Ryan always wanted to be a stuntman and a football player while growing up, or a soldier,” said Tuba. “So when we found out about his diagnosis, his dad and I decided that we were going to give him as many experiences that we can while he’s here. As he would say, ‘living his life to the fullest.’”
The perfect opportunity came when Ryan was able to tandem-jump out of an airplane with a member of the U.S. Army Parachute Team, the Golden Knights. The leap happened in front of his school peers at Potomac Falls High School. He jumped while attached to tandem team instructor and Sgt. 1st Class Chris Acevado, who spoke highly of Ryan after they were safely back on the ground.
“Ryan is a warrior! I have been surrounded by warriors my entire career,” said Acevedo
. “He deals with MPAN as an every day ordeal; in my opinion that gives him the heart of a warrior and it is my pleasure and highest privilege of my career to take Ryan on this Army experience.”
MPAN is a rare and new disease, and when Ryan was diagnosed there was little research and even less funding available. After Ryan’s diagnosis, the Alam family took the dilemma into their own hands and valiantly began raising awareness and gathering additional funds so further research on MPAN would be possible. The family has raised over $350,000 toward the cause while also bringing an unprecedented amount of attention to the disease.
Dr. Fraser, who also leads a research program at Children’s National focusing on the biology of neurometabolic disorders, thanked them for their revolutionary efforts.
“This work started because of Ryan,” said Dr. Fraser. “His parents have been great advocates for him and MPAN research. They ensure that Ryan is living his best life while enabling us to study the biology of MPAN toward a goal of an effective treatment.”