PORTLAND, Ore. — This week, KGW anchor Christine Pitawanich had a chance to chat with the lead singer and guitarist for the Grammy award-winning band Portugal. The Man as they got ready to perform back in their hometown at McMenamin's Edgefield Ampitheatre on Friday, July 21.
The sold-out show starts at 6:30pm, and Christine was able to catch up with singer John Gourley to talk about the band's success and homecoming. This is the fourth show on their tour; their next show is July 23 at Red Rocks in Morrison, Colorado.
Gourley shared an initiative that is close to his heart. His 11-year-old daughter Frances has an ultra-rare genetic condition caused by a DHDDS mutation. That stands for dehydrodolichyl diphosphate synthase, which is a protein-coding gene. What started as ADHD and seemingly subtle delays and inattention, Gourley said, eventually turned into tremors, drop seizures, myoclonic jerking, scoliosis, muscle weakness and other symptoms as a direct result of the disease.
Frances is one of six known cases of this DHDDS condition in the world. Medical science is now in the experimental phase of developing treatments for rare diseases, but because of its ultra-rarity, the research receives very little funding. Gourley said that even though they are a Grammy award-winning band, they cannot afford the research it takes to find treatments for DHDDS.
The band has started a GoFundMe to raise money for DHDDS research. Their campaign is called "Frances Changed My Life - Our search for a cure." They're looking to raise $5 million, which includes both the cost of research for a cure and for Frances' treatments.
Any money raised beyond the cost of Frances' treatments will go toward the research for other families affected by this disease. Gourley said he hopes to build a DHDDS community with this initiative.
To donate and learn more about Frances' story, you can head to their GoFundMe page.