Alpha Rev's Casey McPherson Gave Up a Life in Music to Cure His Daughter's Rare Disease
The Cory Morrow-headlined RoseFest fundraises for FDA clearance on Aug. 12
By Kevin Curtin, Fri., Aug. 4, 2023
In late 2018, Casey McPherson had two stacks of documents staring him in the face. One was a record contract from Sony Music in Germany for his solo material. The other was paperwork for the creation of a nonprofit he dreamed of forming to find a cure for his young daughter's genetic defect. Signing the dotted line on either involved commitments that would render the other impossible.
Music had always been the north star for McPherson, who fronted the early 2000s Austin band Endochine before finding a national audience with his ensuing alternative Americana project Alpha Rev and fronting the prog rock supergroup Flying Colors. His world was turned upside down in 2018 when his 2-year-old daughter Rose was diagnosed with an extremely rare and debilitating disease caused by a mutation in her HNRNPH2 gene.
"Music had been my entire life so it was emotional and epic, ripping my self-identity out and saying, 'I'm gonna turn this deal down and try and save my daughter,'" he reflects.
As difficult as that decision was to make, the choice was clear. The choice was Rose. She's 7 now and faces heartbreaking physical and mental challenges.
"She used to say 'daddy,' but she lost her ability to talk," outlines McPherson. "She barely walks, she's confused all the time, she can't make friends, and she still wears diapers. I feel for her because I can see she's afraid. She's in there, it's just the disease ... it's so tough."
Developing treatments for extraordinarily uncommon diseases, like the condition that affects Rose – which only about 100 people have ever been diagnosed with – isn't a profitable endeavor for pharmaceutical companies. So there's a cottage industry of desperate parents using new technologies and working with scientists to create cures for their children. McPherson, keen on music analogies, compares it to a band "doing it indie."
After minting the To Cure a Rose Foundation in 2019, he began talking to scientists, biotech researchers, and families who've successfully created cures for their kids' diseases and obtained FDA approval. He also fundraised millions through small donations to work towards a cure – that work being done in an Austin-based laboratory called Everlum Bio, which he cofounded with partners Rodney Bowling Jr. and Rick Barkley.
There, scientists have spent the last year and a half working on a drug for Rose. To do that, they created multiple models of her brain cells, comparing healthy ones (corrected using the gene editing technology CRISPR) with cells reflecting the neurological expression of Rose's disease. Using computers, they then designed an antisense oligonucleotide treatment that targets RNA molecules and regulates protein expressions in the mutated gene – knocking them down so they're not neurologically toxic. McPherson believes it will be viable for his daughter.
He likens this development of new medicine to writing songs: "Creating something out of nothing and making somebody feel something they've never felt before."
"I used to party hard," McPherson admits. "I went from doing drugs to escape life to making drugs to save lives."
His lab has now developed the first drug for his daughter's condition that's ever existed. Rose hasn't been able to take it though. Before that can happen, the treatment needs to go through safety testing, clinical trials, and FDA approval. The timeline for all that is a tough pill to swallow for McPherson, who says that the older kids with Rose's disease get, the harder it is for medicine to significantly impact their lives.
Money is also a pressing issue. McPherson says he needs to raise $1.8 million by the end of the year to get the ball rolling on FDA approval. Part of that fundraising effort is RoseFest, happening Saturday, August 12, at Buck's Backyard in Buda. The benefit show will be headlined by Lone Star country giant Cory Morrow alongside Alpha Rev – leaning into their 2013 Americana-tinged album Bloom – and country stylists Broken Arrow. The event will also feature several special guests, one of whom is expected to be Plain White T's guitarist Tim Lopez.
McPherson says that after bringing Rose's medication to fruition, he hopes his lab can create drugs for kids with other rare diseases and help take the strain off their families. Asked what would be his ideal scenario three years from now, he replied: "That Rose can say 'daddy' again, and that I've got a platform for other parents so their kids can grow up not having seizures and live a normal life, because we created a way where there was no way. And that families can come to us saying, 'Here's my kid. Can you help us?' And we can answer, 'Yes.'"
Correction: An earlier version of this story misstated the Plain White T's member that will be performing at RoseFest as Tom Higgenson, when it's actually Tim Lopez. The article has also been updated to clarify the musical projects Casey McPherson has been in and the names of his partners in Everlum Bio.
