Fam's Hustling to Save Son from Super Rare Disease 🚀
Family raising funds for son with rare disease. Yo, this fam's on a mission to fund gene therapy for their son Jack, who's got this mega-rare disease called SPG4. Lemonade stands, a lit space-themed gala with an actual astronaut – they're pulling out all the stops! Meanwhile, NIH funding cuts are st
TL:DR
Yo, this fam's on a mission to fund gene therapy for their son Jack, who's got this mega-rare disease called SPG4. Lemonade stands, a lit space-themed gala with an actual astronaut – they're pulling out all the stops! Meanwhile, NIH funding cuts are straight up messing with research on other rare diseases. And over in the UK, parents are speaking out about the term "losing the battle with cancer" after their daughter Daisy's passing, channeling grief into a charity.
The Deets
Okay, so listen up, this is important. There's this kid, Jack Laidlaw, right? He's got this super rare disease called hereditary spastic paraplegia type four (SPG4) – try saying that five times fast! His parents, Richard and Anna, are total legends and are doing everything they can to find a cure.
They're not just sitting around, either. They're hustling HARD to raise funds for gene therapy research. Like, they've got a whole squad helping out! One of their friends is even running a lemonade stand – how cute is that?! But the real tea is the gala they're throwing at the Brookstreet Hotel on May 24th. And get this, it's SPACE-themed! We're talking astronaut vibes only. And, Canada's first astronaut, Marc Garneau, is gonna be there, spitting straight facts to hype up the cause.
Jack dreams of being one of the first people to walk on Mars, and his parents are doing everything to make that dream a reality. We're all manifesting that for him.
Now for some not so fire news: NIH (National Institutes of Health) funding cuts are straight up messing with progress on rare genetic disorders, like SYNGAP1. This means families face a HUGE struggle dealing with symptoms and trying to get the care they need. Scientists are working on treatments, but the funding cuts could straight up delay everything. SYNGAP1 messes with synapses in the brain, which are like, the super important connections that make everything work. Mutations in SYNGAP1 can cause seizures, developmental delays, and cognitive impairment. Treatments rn only address the symptoms, not the root cause, so its bad vibes.
Also, across the pond in the UK, Alan Birikorang and Chiara Contillo are speaking out about using the phrase "losing the battle with cancer". Their daughter Daisy was diagnosed with rhabdomyosarcoma at age 12 and they feel like the phrase impacted her mental health, like it made her feel like she was a 'loser' just because the treatment wasn't working. She was a "smiley, bubbly" girl who loved life, singing, dancing, and just creating stuff. Daisy ultimately decided to stop treatment when it wasn't working anymore, and her parents are now dealing with that loss by setting up a fundraiser and a charity called "Daisy's Arc" to help fund research into rhabdomyosarcoma.
Abbreviations Glossary
| Abbreviation | Full Form |
|---|---|
| Fam | Family (but can also mean close friends) |
| Lit | Awesome, amazing |
| Tea | Gossip, news |
| Hustling | Working hard, putting in effort |
| Mega-rare | Extremely rare |
| Squad | Group of friends |
| Spitting straight facts | Sharing truthful and important information |
| Manifesting | Hoping for, envisioning |
| Across the pond | Referring to the United Kingdom |
| Bad vibes | Negative emotions, situations, or people. |
| rn | right now |