Alex's Odyssey
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Illumina and TGen collaborate to end diagnostic odyssey for more families.

4/28/2021

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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."
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www.tgen.org/news/2021/april/when-cold-case-reviews-reveal-new-information/
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Alex's name landing on Mars with Perseverance Rover

2/16/2021

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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.

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https://www.tgen.org/news/2021/february/16/alex-yiu-lands-on-mars/
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Alex’s name going to Mars on Perseverance Rover

7/24/2020

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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
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Interview at Global Genes Patient Summit 2019

10/19/2019

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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
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Diagnosis Finally

10/17/2019

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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/
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The IRF2BPL Kids

7/26/2019

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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

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Miraculous intervention yielded diagnosis

10/19/2018

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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:
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Alex – A mystery wrapped in an enigma

3/1/2017

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(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/
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Clarity Undiagnosed Challenge

6/19/2015

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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
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1st Undiagnosed Family Camp at The National Ability Center

3/31/2014

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It was a weekend of fun and joy together with other undiagnosed families at The National Ability Center in Park City, Utah.

https://www.undiagnosedfilm.com/
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1st Annual Undiagnosed Camp from Crowbait Pictures on Vimeo.

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