Alex's Odyssey - Recent Updates

Alex's name landing on Mars with Perseverance Rover

2/16/2021

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.

https://www.tgen.org/news/2021/february/16/alex-yiu-lands-on-mars/

Preparing for a hospital stay

1/28/2021

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.

https://specialneedsresourcefoundationofsandiego.com/how-to-prepare-for-a-childs-hospital-stay/

Alex’s name going to Mars on Perseverance Rover

7/24/2020

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:
https://ktar.com/story/3425980/mars-rover-to-carry-name-of-teen-with-rare-disorder-and-arizona-ties/

Carilla C. (2020) “Latest mission to Mars a special moment for teen with Arizona ties”, Fox10 Phoenix, 29 July. Available at:
https://www.fox10phoenix.com/news/latest-mission-to-mars-a-special-moment-for-teen-with-arizona-ties

Interview at Global Genes Patient Summit 2019

10/19/2019

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

Diagnosis Finally

10/17/2019

A Boy with an Extremely Rare Disorder was Finally Diagnosed Thanks to a Typo

https://patientworthy.com/2019/10/17/boy-extremely-rare-disorder-finally-diagnosed-typo/

The IRF2BPL Kids

7/26/2019

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

Miraculous intervention yielded diagnosis

10/19/2018

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:

Alex – A mystery wrapped in an enigma

3/1/2017

(2017) “Alex Undiagnosed: A Neurodegenerative disease goes unsolved”, Global Genes 1 March, Available at:
https://globalgenes.org/2017/03/01/alex-undiagnosed-a-neurodegenerative-disease-goes-unnamed/

Alex Got a Star Wars Room Makeover

1/10/2016

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

Clarity Undiagnosed Challenge

6/19/2015

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
https://www.childrenshospital.org/research/centers-departmental-programs/manton-center-for-orphan-disease-research/clarity-challenge/families-results

Goldberg.C (2015) "Calling all gene detectives: Solve Diagnostic Mysteries to win contest. Play role in film." WBUR, June 19. Available at:
https://www.wbur.org/commonhealth/2015/06/19/diagnosis-mystery-gene-film