Portugal. The Man singer using platform to raise awareness for rare disease research
Updated: 9:43 AM EST Feb 18, 2024
SEND IT BACK OVER TO MADELEINE AND JACK. THANKS. SUZANNE, THE LEAD SINGER OF THE BAND PORTUGAL. THE MAN IS USING HER PLATFORM TO RAISE AWARENESS FOR RARE DISEASES, AND THAT’S BECAUSE HER DAUGHTER WAS RECENTLY DIAGNOSED WITH ONE. AND OUR ADDIE MEINERS SAT DOWN WITH ZOE MANVILLE BEFORE THE BAND’S SHOW AT PARIS TOWN HALL WEDNESDAY NIGHT FOR ZOE MANVILLE AND HER HUSBAND JOHN GURLEY BEING ON TOUR WITH THEIR BAND PORTUGAL. THE MAN IS THE LIFESTYLE THEY’RE USED TO, BUT LIFE ON THE ROAD CHANGED WHEN THEIR DAUGHTER, FRANCES WAS DIAGNOSED WITH A RARE GENETIC DISEASE CALLED RDS. EVERYBODY HAS A RDS GENE, BUT BUT HERS IS NOT FUNCTIONING. HOW IT SHOULD. AND SO WHEN YOU HAVE SOMETHING LIKE THAT, IT SOMEHOW NOTHING IS. IT SOUNDS SIMPLE, LIKE HAVING A MISPRINT, BUT THAT CHANGES YOUR BIOLOGY. MANVILLE SAYS SHE KNEW SOMETHING WAS WRONG WHEN FRANCES STARTED HAVING SMALL SEIZURES LIKE THIS ONE THAT SHE RECORDED. HER EYES WERE BLINKING, KIND OF LOOKED LIKE SHE WAS FALLING ASLEEP. YOU OKAY, FRANCES? AND SHE JUST SNAPPED RIGHT BACK. SO AT THE TIME, WE DIDN’T EVEN REALIZE THAT THAT’S WHAT IT WAS. THE DISEASE CAUSES SYMPTOMS SIMILAR TO ALZHEIMER’S AND PARKINSON’S DISEASE, INCLUDING SEIZURES, EPILEPSY, A LOSS OF MUSCLE CONTROL, AND DEMENTIA. ONLY 70 PEOPLE AROUND THE WORLD HAVE BEEN DIAGNOSED WITH RDS, SO THERE HASN’T BEEN MUCH RESEARCH ON WHAT CAUSES IT OR TREATMENTS. OUR GOAL IS TO CHANGE THAT. WE WANT TO KEEP THE RESEARCH GOING ON THIS DISEASE, MANVILLE SAYS. THE BAND RAISES AWARENESS FOR RDS AND ALL RARE DISEASES BY SHARING FRANCIS’S STORY, SELLING MERCH AND RUNNING A WEBSITE DEDICATED TO THE CAUSE, ALL IN HOPES THAT IT WILL ENCOURAGE MORE RESEARCH. WE DO HAVE THE PLATFORM TO TALK ABOUT IT, SO IT YOU KNOW, I THINK IT WOULD BE A DISSERVICE TO THE WHOLE RARE DISEASE COMMUNITY TO NOT TO NOT TALK ABOUT IT. HI, MY NAME IS FRANCES. THIS IS MY MOM. AS FOR FRANCES MANVILLE SAYS SHE STILL A BUBBLY, OUTGOING 12 YEAR OLD GIRL WHO LOVES TO SING AND DANCE. SHE EVEN GOT A FEATURE ON THE BAND’S NEW ALBUM, WHERE SHE SINGS, THINGS ARE GOING TO BE JUST FINE. WE PERFORM IT AND YOU KNOW, WE SING THOSE SONGS EVERY NIGHT AT THE MOMENT. UM, IT’S COMFORTING TO ME. ADDIE MEINERS WLKY NEWS ADDIE. THANK YOU AND WE’LL HAVE MORE INFORMATION ON OUR WEBSITE ABOUT
Portugal. The Man singer using platform to raise awareness for rare disease research
Updated: 9:43 AM EST Feb 18, 2024
A singer in the band Portugal. The Man is using her platform to raise awareness for rare disease research.The band was in Louisville Wednesday night playing a show at Paristown Hall.Zoe Manville and lead singer/guitarist John Gurley have a daughter, Frances, who was recently diagnosed with DHDDS (Dehydrodolichyl diphosphate synthase).This rare neurodegenerative disease causes both mental and physical decline, similar to Alzheimer's and Parkinson's disease.Now, her parents are hoping that sharing her story will encourage more research for rare diseases."All these rare diseases, they have some similarities in what they do. A lot of them are progressive. A lot of them don't have treatments. And so I think all the families like doing what we're doing. There's so many out there. I think it will make an impact," Manville said.
LOUISVILLE, Ky. — A singer in the band Portugal. The Man is using her platform to raise awareness for rare disease research.
The band was in Louisville Wednesday night playing a show at Paristown Hall.
Zoe Manville and lead singer/guitarist John Gurley have a daughter, Frances, who was recently diagnosed with DHDDS (Dehydrodolichyl diphosphate synthase).
This rare neurodegenerative disease causes both mental and physical decline, similar to Alzheimer's and Parkinson's disease.
Now, her parents are hoping that sharing her story will encourage more research for rare diseases.
"All these rare diseases, they have some similarities in what they do. A lot of them are progressive. A lot of them don't have treatments. And so I think all the families like doing what we're doing. There's so many out there. I think it will make an impact," Manville said.