• by Les Luchter , Yesterday

FSGS (focal segmental glomerulosclerosis) is a rare kidney disease (RKD) with no specific FDA-approved therapy.

Travere Therapeutics has one in its pipeline, though, and on June 10 launched an awareness campaign for the disease.

Called “Play It Forward,” the campaign features two celebrity FSGS patients: Brian Kennedy, a Grammy-winning producer for such artists as Rihanna and Kelly Clarkson, and singer-songwriter David Rush.

Together, they’ve created the song “Feels So Good,” which a campaign video encourages FSGS community members to use as the soundtrack for their own social media content.

“Feels so good, even though it don’t seem right. But it’s my life, and we’re gonna be all right,” Rush sings. “Feels so good even in my darkest night, but I won’t give up the fight, because I’m walking in my light.”

“We would like you guys to make this anthem your anthem,” Kennedy tells viewers of a 3-minute hero video “in which he calls the song “life-changing” and “uplifting.”  “Whatever it is that makes you uniquely you, we want you to add to this anthem – dancing, singing, rapping, painting,” he explains, with Rush joining him in a final call to “play it forward.”

Destyn Fuller Hope, the video’s director and fellow FSGS patient, also appears, expressing hope “that this campaign brings us all together.”

The campaign elements are housed at a dedicated page of FSGS&Me, which lives on the RKD&Me website.  (RKD = rare kidney disease).

Travere is urging FSGS patients to spread the wordby using the hashtag #PlayitForwardFSGS in their posts. “Every FSGS story strengthens our collective voice. Your story could be the one that makes a meaningful difference for someone else,” the company posted. “Join the movement and see how you can play it forward.”

Travere’s Filspari, which was approved by the FDA last fall for treatment of another rare kidney disease, IgA nephropathy (IgAN), is now also being considered to treat FSGS, the company announced last month.

Also last month, Amicus Therapeutics spent a reported $30 million to acquire the  U.S. rights to an FSGS pipeline drug called  DMX-200 from Australia’s Dimerix.

Tuesday also marks the inaugural FSGS Awareness Day, spearheaded by the nonprofit NephCure, which works towards finding cures for rare kidney diseases. In addition to Travere and Dimerix, NephCure also cites Sanofi, Apellis and Boehringer Ingelheim as corporate partners of the event. 

Travere says that FSGS, which affects more than 40,000 patients in the U.S., is defined by progressive scarring of the kidneys, often leading to kidney failure.