<![CDATA[Alex's Odyssey - Recent Updates]]>Sat, 28 Feb 2026 10:23:56 -0800Weebly<![CDATA[A Birthday Album Release. A Gift of Hope.]]>Fri, 27 Feb 2026 22:51:09 GMThttps://www.alexsodyssey.com/recent-updates/a-birthday-album-release-a-gift-of-hopeTo mark his birthday, Alex is releasing an album of original songs—transforming a personal milestone into a mission to help fund treatments for all those living with IRF2BPL disorder. Instead of gifts, Alex is inviting the world to give something greater: support, momentum, and hope.

Celebrate Alex’s Birthday With Purpose
This birthday, Alex is turning music into hope. Your donation—made directly to Alex’s Tough Genes fundraising page — supports treatment‑focused efforts for those affected by IRF2BPL disorder.

About Tough Genes
Tough Genes is a 501(c)(3) nonprofit organization founded by parents of a child with IRF2BPL‑Related Disorder. The organization is dedicated to advancing scientific knowledge and medical understanding of the IRF2BPL gene, with the goal of developing a safe and effective treatment for those affected by this rare condition.]]><![CDATA[Rare Artist 2025 Showcase at NIH Rare Disease Day]]>Fri, 27 Feb 2026 22:42:24 GMThttps://www.alexsodyssey.com/recent-updates/rare-artist-2025-showcase-at-nih-rare-disease-day​EveryLife Foundation for Rare Diseases - Rare Artist 2025
Rare Disease Day 2026

In honor of Rare Disease Day, Alex’s story—living with IRF2BPL Disorder—will be featured at the NIH Rare Disease Day event in Washington, DC, on February 27, 2026.

As a 2025 RARE Artist recipient, Alex uses music as a powerful form of advocacy. His original song, “Tennessee,” reflects his lived experience with IRF2BPL Disorder and gives voice to the challenges, resilience, and hope shared by so many in the rare disease community.

Being showcased at this national event highlights the importance of personal storytelling in advancing rare disease awareness, research, and understanding. On Rare Disease Day, we join the global community in recognizing the strength of those affected and in amplifying voices like Alex’s that drive connection and change.
Picture
]]><![CDATA[Alex wins 2025 Rare Artist Award]]>Tue, 11 Nov 2025 08:00:00 GMThttps://www.alexsodyssey.com/recent-updates/alex-named-a-2025-rare-artist-awardeeFull press release:
]]><![CDATA[Everylife Foundation “Rare Artist 2025” Finalist]]>Mon, 01 Sep 2025 07:00:00 GMThttps://www.alexsodyssey.com/recent-updates/everylife-foundation-rare-artist-2025-finalist​Alex is 1 of 20 finalists selected by Everylife Foundation judges for Rare Artist 2025. This annual contest is in it’s 15th year and has provided a platform for individuals impacted by rare diseases to showcase their unique talents in visual artwork, poetry and music while bringing awareness to their rare disorder. Public voting will be open 22-30 September 2025.

​Please visit https://everylifefoundation.org/rare-artist/ to view the 2025 finalists. Be sure to visit Alex’s Youtube channel to listen to his original songs.

​]]><![CDATA[Undiagnosed Documentary film awarded Best Feature Documentary at the 9th Annual San Diego Film Awards]]>Sat, 01 Jul 2023 07:00:00 GMThttps://www.alexsodyssey.com/recent-updates/undiagnosed-documentary-film-awarded-best-feature-documentary-at-the-9th-annual-san-diego-film-awards“Undiagnosed” documentary film has earned nine awards to date since the documentary premiered at the 38th Annual Boston Film Festival in 2022. The film has been selected and viewed at twenty five film festivals in seven countries. The most recent win is the award for Best Feature Documentary at the 9th Annual San Diego Film Awards. We are honored to be one of four families sharing our stories in hope to raise the awareness for the millions of people struggling without a diagnosis and spark action to make the medical system better. Please visit www.undiagnosedfilm.com for updates on the film and how you can help with the Undiagnosed film “Impact Campaign”. 

​“Undiagnosed” Film earned awards to date include:

Best Feature Documentary, 2022 Katra Film Series NYC
​
Best First Feature, 2022 Toronto International Nollywood Film Festival​

Best Story in a Documentary Feature, Special Jury Award 2022 Red Rock Film Festival

Best Utah Filmmaker, Grand Jury Award 2022 Red Rock Film Festival
​
Best Hook - Documentary Feature, 2022 Utah Film Market

Best First Time Filmmaker Feature, 2023 Denver Movie Awards

Best Feature Documentary, 2023 Jacksonville Film Festival

Award of Excellence,  Docs Without Borders International Film Festival 2023

Best Feature Documentary, San Diego Film Awards 2023



]]><![CDATA[Podcast with Rare Mamas Rising]]>Thu, 13 Apr 2023 07:00:00 GMThttps://www.alexsodyssey.com/recent-updates/podcast-with-rare-mamas-risingRare Mamas Rising is a podcast created by Nikki McIntosh, a rare mom that inspires and encourages other mothers of children with rare disorders through her podcast. In episode 14, Nikki talks to Alex's mom, Caroline about his journey to diagnosis and what resources are available for parents still seeking diagnosis for their child. 
​
https://raremamas.com/episodes/ep14-rare-mamas-rising-a-north-star-in-a-rare-universe-with-cure-founder-rare-mom-caroline-cheung-yiu/


]]><![CDATA[Documentary film "Undiagnosed" World Premiere at the 38th Boston Film Festival in Boston, Massachusetts.]]>Sat, 17 Sep 2022 07:00:00 GMThttps://www.alexsodyssey.com/recent-updates/documentary-film-undiagnosed-world-premiere-at-the-38th-boston-film-festival-in-boston-massachusettsWe 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.]]><![CDATA[The Balancing Act - Behind the Mystery TV series - Rare Disease Day 2022]]>Mon, 28 Feb 2022 08:00:00 GMThttps://www.alexsodyssey.com/recent-updates/the-balancing-act-behind-the-mystery-tv-series-rare-disease-day-2022The 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.
]]><![CDATA[Podcast with Sanford CoRDS]]>Mon, 10 May 2021 07:00:00 GMThttps://www.alexsodyssey.com/recent-updates/podcast-with-sanford-cords"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."
]]><![CDATA[Illumina and TGen collaborate to end diagnostic odyssey for more families.]]>Wed, 28 Apr 2021 07:00:00 GMThttps://www.alexsodyssey.com/recent-updates/illumina-and-tgen-collaborate-to-end-diagnostic-odyssey-for-more-familiesWhen 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/]]>