Latest news with #FSGS
Business Wire
2 days ago
- Entertainment
- Business Wire
Travere Therapeutics Launches "Play It Forward" Campaign to Celebrate the FSGS Community on Inaugural Awareness Day
SAN DIEGO--(BUSINESS WIRE)--Travere Therapeutics, Inc. (NASDAQ: TVTX) today announced the launch of a new awareness campaign, 'Play It Forward,' to bring hope and encouragement to the focal segmental glomerulosclerosis (FSGS) community. FSGS is a rare kidney disease (RKD) affecting children and adults and a leading cause of kidney failure. "We are proud to support the FSGS community in amplifying individual expressions of life and courage, and we're committed to transforming the challenges of FSGS into pathways of hope and healing." Share Launching on the first-ever FSGS Awareness Day, the campaign features a powerful anthem, written and produced by Grammy-winning musician Brian Kennedy and singer-songwriter, David Rush, both living with FSGS. The song celebrates the strength of the FSGS community coming together. The musicians invite the FSGS community to use the soundtrack to post their own creative and artistic expressions on social media, showcasing the unique talents of the community and the stories of individuals who are thriving beyond the limits of FSGS. "When I received my FSGS diagnosis, it felt like the volume of my life was suddenly turned down. My studio became my sanctuary," said Brian Kennedy, a multi-Grammy-winning producer, songwriter, and pianist. "I'm proud to play it forward with music that helps others hear their own strength. Together, we're translating the invisible struggle of FSGS into creative expressions that everyone can witness, creating a soundtrack for solidarity." "Every FSGS story has the power to make a meaningful difference in someone else's life," said David Rush, singer, songwriter, motivational speaker, FSGS advocate, and patient. "While living with FSGS may try to dim my light, my music replenishes my spirit – that's how I play it forward for others fighting FSGS. This campaign provides a platform for patients and their loved ones to share experiences that offer hope, guidance, and inspiration to others facing similar challenges." The campaign launch also features a hero video featuring Kennedy and Rush discussing their FSGS journeys and documenting the creation of their anthem. By uniting with the FSGS community, the two artists turn isolation into connection, using their shared experiences to inspire and empower others living with FSGS. "On FSGS Awareness Day and every day, we know that obstacles impede every step of the patient journey -- from diagnostic hurdles to an often-aggressive progression to kidney failure,' said Jula Inrig, M.D., chief medical officer at Travere Therapeutics. 'We are proud to support the FSGS community in amplifying individual expressions of life and courage, and we're committed to transforming the challenges of FSGS into pathways of hope and healing." To follow or participate in the campaign, search #PlayitForwardFSGS. Learn more at About FSGS Focal segmental glomerulosclerosis (FSGS) is a rare proteinuric kidney disorder in children and adults that is estimated to affect more than 40,000 patients in the U.S., with similar prevalence in Europe. The disorder is defined by progressive scarring of the kidneys and often leads to kidney failure. FSGS is characterized by proteinuria, in which protein leaks into the urine due to a breakdown of the normal filtration mechanism in the kidney. Once in the urine, protein is toxic to other parts of the kidney, especially the tubules, and is believed to contribute to further disease progression. Other common symptoms include swelling in parts of the body, known as edema, as well as low blood albumin levels, abnormal lipid profiles and hypertension. There are currently no FDA-approved pharmacologic therapies for FSGS. About Travere Therapeutics At Travere Therapeutics, we are in rare for life. We are a biopharmaceutical company that comes together every day to help patients, families, and caregivers of all backgrounds as they navigate life with a rare disease. On this path, we know the need for treatment options is urgent – that is why our global team works with the rare disease community to identify, develop, and deliver life-changing therapies. In pursuit of this mission, we continuously seek to understand the diverse perspectives of rare patients and to courageously forge new paths to make a difference in their lives and provide hope – today and tomorrow. For more information, visit
New York Post
09-05-2025
- Health
- New York Post
Mom forced to put career on hold to care for daughter with rare kidney condition —now pair achieve lifelong dream together
For years, Ambrealle Brown was forced to put her dreams of becoming a nurse on hold due to a life-threatening kidney disease that left her temporarily incapacitated. Amid inner doubts about whether she would ever return to living a normal life, Brown's mother stepped in and offered to donate her kidney. Doctors performed Louisiana's first robotic kidney transplant, giving Brown a renewed chance at life and Nija Butler the opportunity to see her daughter thrive. Nearly two years after the successful transplant, the Louisiana mother and daughter shared another journey. Donning white caps and gowns, they walked across the stage together in Baton Rouge and graduated from nursing school. 6 Mother and daughter duo Nija Butler and Ambrealle Brown are graduating from nursing school together after Butler donated a kidney to her daughter to treat her kidney disease. Courtesy Ambrealle Brown 6 Doctors performed Louisiana's first robotic kidney transplant on the two. AP 'As parents, we always tell our children, we would die for you, and kids don't always understand that kind of love,' Butler, 48, said. 'I would have given anything for her to live. I mean that from the bottom of my heart, without a second thought.' During an interview with The Associated Press last month, the two women reflected on their journey together and the challenges they have overcome. The Louisiana mother-daughter duo has always been close. Butler gave birth to her daughter when she was in high school, and as a result, they grew up together. Butler poured herself into raising her daughter and son, and Brown planned to become a nurse. But in 2016, when Brown was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare kidney disease that can cause kidney failure, everything changed. Her prognosis quickly worsened. One day, Brown, who was taking prerequisite courses for nursing school, felt her legs tighten to the point that she could not move. Shortly after, Brown's doctor delivered detrimental news: Brown would either need to start dialysis or have a kidney transplant to survive. The average wait for a kidney transplant in the U.S. can vary from two to five years, or longer, depending on certain factors, based on data from the National Kidney Foundation. 6 The two graduated from the Baton Rouge General School of Nursing together in April. Courtesy Ambrealle Brown Brown desperately hoped for a new kidney. But as she awaited news of a transplant, she was forced to turn to dialysis — a treatment that lasted nine to 13 hours, every single day. Brown's daily life was limited, and she had to stop school. After years of dialysis, Butler said she saw a shift in her daughter, who was typically optimistic. 'It was like she wanted to give up,' Butler recalled about a phone call with her daughter. 'She was tired of just being connected to a tube that her life revolved around.' Although doctors had previously told Butler she likely wasn't a match to be a kidney donor for her daughter, she still scheduled an appointment to get tested the next day. She opted not to tell her daughter, not wanting to get her hopes up in case it wasn't a viable match. Soon after, Brown got news she had been waiting five years to hear — she was getting a new kidney. She called her mother to tell her, but her mom already knew. Confused, Brown asked her mother how she would know that. 'It's me,' Butler responded. The two underwent surgery in March 2023, with Tulane University School of Medicine doctors performing the state's first kidney transplant using a robotic surgical system. The practice offers increased precision so the procedure is minimally invasive, hoping there will be less pain and a speedier recovery. After the successful surgery, Brown returned her focus to school. Her mother decided to get her registered nurse's license as well. 6 Brown and Butler underwent surgery in March 2023. Courtesy Ambrealle Brown 6 Tulane University School of Medicine's doctors performed the state's first kidney transplant using a robotic surgical system. Courtesy Ambrealle Brown For 16 months, they were attached at the hip. They sat together, studied together, and, in April, graduated from the Baton Rouge General School of Nursing together. 'I couldn't have done it without her because nursing school is hard,' Brown, 34, said. 'I'm happy that I was able to go through that milestone with her side by side.' Brown has accepted a job at a burns intensive care unit, and Butler is continuing her career at a psychiatric facility. 6 'I would have given anything for her to live. I mean that from the bottom of my heart, without a second thought,' Butler said. AP The ladies hope their story inspires others to never give up and also spread awareness about the importance of medical testing and the donor and transplant process. 'Thank you for giving me life twice,' Brown said to her mother. 'I have to keep saying that because you gave me a second chance at life, and most people don't get do-overs.' Butler wiped away a tear and, without skipping a beat, said, 'And I would do it again.'
Hamilton Spectator
09-05-2025
- Health
- Hamilton Spectator
Daughter says mom ‘gave me life twice' with kidney donation as pair graduate nursing school together
BATON ROUGE, La. (AP) — For years, Ambrealle Brown was forced to put her dreams of becoming a nurse on hold due to a life-threatening kidney disease that left her temporarily incapacitated. Amid inner doubts about whether she would ever return to living a normal life, Brown's mother stepped in and offered to donate her kidney. Doctors performed Louisiana's first robotic kidney transplant, giving Brown a renewed chance at life and Nija Butler the opportunity to see her daughter thrive. Nearly two years after the successful transplant, the Louisiana mother and daughter shared another journey. Donning white caps and gowns, they walked across the stage together in Baton Rouge and graduated from nursing school. 'As parents, we always tell our children, we would die for you, and kids don't always understand that kind of love,' Butler, 48, said. 'I would have given anything for her to live. I mean that from the bottom of my heart, without a second thought.' During an interview with The Associated Press last month, the two women reflected on their journey together and the challenges they have overcome. The Louisiana mother-daughter duo has always been close. Butler gave birth to her daughter when she was in high school, and as a result, they grew up together. Butler poured herself into raising her daughter and son, and Brown planned to become a nurse. But in 2016, when Brown was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare kidney disease that can cause kidney failure, everything changed. Her prognosis quickly worsened. One day, Brown, who was taking prerequisite courses for nursing school, felt her legs tighten to the point that she could not move. Shortly after, Brown's doctor delivered detrimental news: Brown would either need to start dialysis or have a kidney transplant to survive. The average wait for a kidney transplant in the U.S. can vary from two to five years, or longer, depending on certain factors, based on data from the National Kidney Foundation. Brown desperately hoped for a new kidney. But as she awaited news of a transplant, she was forced to turn to dialysis — a treatment that lasted nine to 13 hours, every single day. Brown's daily life was limited, and she had to stop school. After years of dialysis, Butler said she saw a shift in her daughter, who was typically optimistic. 'It was like she wanted to give up,' Butler recalled about a phone call with her daughter. 'She was tired of just being connected to a tube that her life revolved around.' Although doctors had previously told Butler she likely wasn't a match to be a kidney donor for her daughter, she still scheduled an appointment to get tested the next day. She opted not to tell her daughter, not wanting to get her hopes up in case it wasn't a viable match. Soon after, Brown got news she had been waiting five years to hear — she was getting a new kidney. She called her mother to tell her, but her mom already knew. Confused, Brown asked her mother how she would know that. 'It's me,' Butler responded. The two underwent surgery in March 2023, with Tulane University School of Medicine doctors performing the state's first kidney transplant using a robotic surgical system. The practice offers increased precision so the procedure is minimally invasive, hoping there will be less pain and a speedier recovery. After the successful surgery, Brown returned her focus to school. Her mother decided to get her registered nurse's license as well. For 16 months, they were attached at the hip. They sat together, studied together, and, in April, graduated from the Baton Rouge General School of Nursing together. 'I couldn't have done it without her because nursing school is hard,' Brown, 34, said. 'I'm happy that I was able to go through that milestone with her side by side.' Brown has accepted a job at a burns intensive care unit, and Butler is continuing her career at a psychiatric facility. The ladies hope their story inspires others to never give up and also spread awareness about the importance of medical testing and the donor and transplant process. 'Thank you for giving me life twice,' Brown said to her mother. 'I have to keep saying that because you gave me a second chance at life, and most people don't get do-overs.' Butler wiped away a tear and, without skipping a beat, said, 'And I would do it again.'
San Francisco Chronicle
09-05-2025
- Health
- San Francisco Chronicle
Daughter says mom 'gave me life twice' with kidney donation as pair graduate nursing school together
BATON ROUGE, La. (AP) — For years, Ambrealle Brown was forced to put her dreams of becoming a nurse on hold due to a life-threatening kidney disease that left her temporarily incapacitated. Amid inner doubts about whether she would ever return to living a normal life, Brown's mother stepped in and offered to donate her kidney. Doctors performed Louisiana's first robotic kidney transplant, giving Brown a renewed chance at life and Nija Butler the opportunity to see her daughter thrive. Nearly two years after the successful transplant, the Louisiana mother and daughter shared another journey. Donning white caps and gowns, they walked across the stage together in Baton Rouge and graduated from nursing school. 'As parents, we always tell our children, we would die for you, and kids don't always understand that kind of love,' Butler, 48, said. 'I would have given anything for her to live. I mean that from the bottom of my heart, without a second thought.' During an interview with The Associated Press last month, the two women reflected on their journey together and the challenges they have overcome. The Louisiana mother-daughter duo has always been close. Butler gave birth to her daughter when she was in high school, and as a result, they grew up together. Butler poured herself into raising her daughter and son, and Brown planned to become a nurse. But in 2016, when Brown was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare kidney disease that can cause kidney failure, everything changed. Her prognosis quickly worsened. One day, Brown, who was taking prerequisite courses for nursing school, felt her legs tighten to the point that she could not move. Shortly after, Brown's doctor delivered detrimental news: Brown would either need to start dialysis or have a kidney transplant to survive. The average wait for a kidney transplant in the U.S. can vary from two to five years, or longer, depending on certain factors, based on data from the National Kidney Foundation. Brown desperately hoped for a new kidney. But as she awaited news of a transplant, she was forced to turn to dialysis — a treatment that lasted nine to 13 hours, every single day. Brown's daily life was limited, and she had to stop school. After years of dialysis, Butler said she saw a shift in her daughter, who was typically optimistic. 'It was like she wanted to give up,' Butler recalled about a phone call with her daughter. 'She was tired of just being connected to a tube that her life revolved around.' Although doctors had previously told Butler she likely wasn't a match to be a kidney donor for her daughter, she still scheduled an appointment to get tested the next day. She opted not to tell her daughter, not wanting to get her hopes up in case it wasn't a viable match. Soon after, Brown got news she had been waiting five years to hear — she was getting a new kidney. She called her mother to tell her, but her mom already knew. Confused, Brown asked her mother how she would know that. 'It's me," Butler responded. The two underwent surgery in March 2023, with Tulane University School of Medicine doctors performing the state's first kidney transplant using a robotic surgical system. The practice offers increased precision so the procedure is minimally invasive, hoping there will be less pain and a speedier recovery. After the successful surgery, Brown returned her focus to school. Her mother decided to get her registered nurse's license as well. For 16 months, they were attached at the hip. They sat together, studied together, and, in April, graduated from the Baton Rouge General School of Nursing together. 'I couldn't have done it without her because nursing school is hard," Brown, 34, said. 'I'm happy that I was able to go through that milestone with her side by side.' Brown has accepted a job at a burns intensive care unit, and Butler is continuing her career at a psychiatric facility. The ladies hope their story inspires others to never give up and also spread awareness about the importance of medical testing and the donor and transplant process. 'Thank you for giving me life twice," Brown said to her mother. 'I have to keep saying that because you gave me a second chance at life, and most people don't get do-overs.'
Winnipeg Free Press
09-05-2025
- Health
- Winnipeg Free Press
Daughter says mom ‘gave me life twice' with kidney donation as pair graduate nursing school together
BATON ROUGE, La. (AP) — For years, Ambrealle Brown was forced to put her dreams of becoming a nurse on hold due to a life-threatening kidney disease that left her temporarily incapacitated. Amid inner doubts about whether she would ever return to living a normal life, Brown's mother stepped in and offered to donate her kidney. Doctors performed Louisiana's first robotic kidney transplant, giving Brown a renewed chance at life and Nija Butler the opportunity to see her daughter thrive. Nearly two years after the successful transplant, the Louisiana mother and daughter shared another journey. Donning white caps and gowns, they walked across the stage together in Baton Rouge and graduated from nursing school. 'As parents, we always tell our children, we would die for you, and kids don't always understand that kind of love,' Butler, 48, said. 'I would have given anything for her to live. I mean that from the bottom of my heart, without a second thought.' During an interview with The Associated Press last month, the two women reflected on their journey together and the challenges they have overcome. The Louisiana mother-daughter duo has always been close. Butler gave birth to her daughter when she was in high school, and as a result, they grew up together. Butler poured herself into raising her daughter and son, and Brown planned to become a nurse. But in 2016, when Brown was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare kidney disease that can cause kidney failure, everything changed. Her prognosis quickly worsened. One day, Brown, who was taking prerequisite courses for nursing school, felt her legs tighten to the point that she could not move. Shortly after, Brown's doctor delivered detrimental news: Brown would either need to start dialysis or have a kidney transplant to survive. The average wait for a kidney transplant in the U.S. can vary from two to five years, or longer, depending on certain factors, based on data from the National Kidney Foundation. Brown desperately hoped for a new kidney. But as she awaited news of a transplant, she was forced to turn to dialysis — a treatment that lasted nine to 13 hours, every single day. Brown's daily life was limited, and she had to stop school. After years of dialysis, Butler said she saw a shift in her daughter, who was typically optimistic. 'It was like she wanted to give up,' Butler recalled about a phone call with her daughter. 'She was tired of just being connected to a tube that her life revolved around.' Although doctors had previously told Butler she likely wasn't a match to be a kidney donor for her daughter, she still scheduled an appointment to get tested the next day. She opted not to tell her daughter, not wanting to get her hopes up in case it wasn't a viable match. Soon after, Brown got news she had been waiting five years to hear — she was getting a new kidney. She called her mother to tell her, but her mom already knew. Confused, Brown asked her mother how she would know that. 'It's me,' Butler responded. The two underwent surgery in March 2023, with Tulane University School of Medicine doctors performing the state's first kidney transplant using a robotic surgical system. The practice offers increased precision so the procedure is minimally invasive, hoping there will be less pain and a speedier recovery. After the successful surgery, Brown returned her focus to school. Her mother decided to get her registered nurse's license as well. For 16 months, they were attached at the hip. They sat together, studied together, and, in April, graduated from the Baton Rouge General School of Nursing together. Winnipeg Jets Game Days On Winnipeg Jets game days, hockey writers Mike McIntyre and Ken Wiebe send news, notes and quotes from the morning skate, as well as injury updates and lineup decisions. Arrives a few hours prior to puck drop. 'I couldn't have done it without her because nursing school is hard,' Brown, 34, said. 'I'm happy that I was able to go through that milestone with her side by side.' Brown has accepted a job at a burns intensive care unit, and Butler is continuing her career at a psychiatric facility. The ladies hope their story inspires others to never give up and also spread awareness about the importance of medical testing and the donor and transplant process. 'Thank you for giving me life twice,' Brown said to her mother. 'I have to keep saying that because you gave me a second chance at life, and most people don't get do-overs.' Butler wiped away a tear and, without skipping a beat, said, 'And I would do it again.'
