After launching from earth 7 months ago, NASA's Mars Perseverance Rover has landed on Mars. On board with the rover on Mars is Alex's name etched onto a microchip along with 10.9 million other names. Alex's mission to raise funds for undiagnosed children and the rare disease IRF2BPL/NEDAMSS continues through TGen Center for Rare Childhood Disorders and Stand by Eli Foundation.
Unfortunately, over the years we have accumulated much time staying at the hospital. I hope other families can benefit by the few hospital essentials I shared with the Special Needs Resource Foundation of San Diego.
Alex's name is one of the 10.9 million names on board the NASA’s Mars 2020 rover, Perseverance. launched from Cape Canaveral Air Force Station in Florida on 30 July 2020. Perseverance will be landing on Mars on 18 February 2021. Read full stories here:
Kinnerup T. (2020) “Mars Rover to Carry Name of Teen with Rare Disorder and Arizona Ties”, KTAR News 92.3 FM, 24 July. Available at:
Carilla C. (2020) “Latest mission to Mars a special moment for teen with Arizona ties”, Fox10 Phoenix, 29 July. Available at:
After speaking to Science Desk Journalist, Richard Harris at the Global Genes Patient Advocacy Summit, Alex's 12 year diagnostic journey was featured on NPR "Morning Edition". Read full story here:
Harris R. (2019) “A boy’s mysterious illness leads his family on a diagnostic odyssey”, NPR. 19 October. Available at: https://www.npr.org/sections/health-shots/2019/10/16/769462793/a-boys-mysterious-illness-leads-his-family-on-a-diagnostic-odyssey
A Boy with an Extremely Rare Disorder was Finally Diagnosed Thanks to a Typo
Yahoo news just published article regarding IRF2BPL disorder.
Belkin L. (2019) “DNA Detectives: New Tech can mean a diagnosis for your child, but not a lot of answers”, Yahoo News, 26 July. Available at: https://news.yahoo.com/in-unknown-territory-parents-get-a-roadmap-from-undiagnosed-diseases-network-090000192.html
After more than 10 years with no diagnosis, in the fall of 2018, by miraculous intervention, Alex was a cold case revisited at TGen’s Center for Rare Childhood Disorders and this yielded a diagnosis! See full interview at The ASHG Annual Conference in 2018 here:
(2017) “Alex Undiagnosed: A Neurodegenerative disease goes unsolved”, Global Genes 1 March, Available at:
Thanks to the team at Cecily's Closet as well as the help from the Multi Age Class (MAC) at The Cardiff School, Alex was able to get a room makeover recently. Alex's favorite movie is Star Wars so it will come as no surprise that this was the theme he selected for his new room. Alex was becoming too heavy to carry up and down stairs so Cecily's Closet helped his family transform their dining room into a new space for Alex to enjoy.
For the full story, visit here
The Undiagnosed documentary production team, Boston Children's Hospital and Illumina launched the Clarity Undiagnosed Challenge to gather the world's top research teams in a contest to diagnose 5 patients whose medical mysteries have baffled physicians.
(2015) Clarity Undiagnosed Family & Results
Goldberg.C (2015) "Calling all gene detectives: Solve Diagnostic Mysteries to win contest. Play role in film." WBUR, June 19. Available at: