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.
|
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.
0 Comments
“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
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.
https://raremamas.com/episodes/ep14-rare-mamas-rising-a-north-star-in-a-rare-universe-with-cure-founder-rare-mom-caroline-cheung-yiu/ 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" 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.
"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." www.tgen.org/news/2021/april/when-cold-case-reviews-reveal-new-information/ 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/ 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 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 |