To 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.

​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.

Full press release:

​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.

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“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
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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
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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

Rare 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. 
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https://raremamas.com/episodes/ep14-rare-mamas-rising-a-north-star-in-a-rare-universe-with-cure-founder-rare-mom-caroline-cheung-yiu/

"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."

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/