Alex's Odyssey - Recent Updates

Documentary film "Undiagnosed" World Premiere at the 38th Boston Film Festival in Boston, Massachusetts.

9/17/2022

We are thrilled to share with you an exciting update from Crystal who have followed and filmed Alex’s journey for 9 years! The world premiere of the documentary film "Undiagnosed" will take place at the 38th Boston Film Festival in Boston, Massachusetts 22-26 September 2022. You can view the film festival trailer at https://undiagnosedfilm.com/ and access a link to get tickets to the virtual viewing of "Undiagnosed" at the Boston Film Festival.

“Undiagnosed” film also has been accepted at 8 other upcoming film festivals to date around the world. Please visit the film website https://undiagnosedfilm.com/ and Facebook https://www.facebook.com/undiagnosedfilm page regularly for updates.

We are honored to be part of this project to raise awareness of those who suffer from debilitating illness without a diagnosis. We hope this film will instill an urge for people to take action and help shorten the diagnostic odyssey.

Thank you for years of support, love and prayers.

The Balancing Act - Behind the Mystery TV series - Rare Disease Day 2022

2/28/2022

The Balancing Act - Behind the Mystery" is a TV series on the Lifetime channel that brings to light the struggles and strengths of rare disease patients and their families. Expanding awareness and education for the rare disease community. Caroline, Alex's mom, is one of three courageous rare moms interviewed for this Rare Disease Day Special 2022 marking Rare Disease Day 28 February 2022.

Podcast with Sanford CoRDS

5/10/2021

"On this month’s episode of CoRDS Cast, Alyssa sits down with Caroline Yiu. Caroline’s son Alex, was diagnosed with a very rare neurodegenerative disorder called NEDAMSS (Neurodevelopmental Disorder with Regression, Abnormal Movements, Loss of Speech, and Seizures.) This condition is caused by a spontaneous mutation in the IRF2BPL gene. Caroline’s family went on a 10 year journey to find a diagnosis for her son Alex. Caroline is also an advocate for families with children fighting chronic complex medical issues without a diagnosis but also those with rare diseases."

Illumina and TGen collaborate to end diagnostic odyssey for more families.

4/28/2021

When Cold Case Reviews Reveal New Information
"Although TGen's Center for Rare Childhood Disorders has helped hundreds of patients end their diagnostic odysseys, there have been cases we couldn’t solve. But thanks to an exciting collaboration with the industry leader in sequencing, Illumina, these cold cases will receive a boost through improved technology that enhances TGen’s sequencing capabilities, which will mean more answers for more families."

www.tgen.org/news/2021/april/when-cold-case-reviews-reveal-new-information/

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