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NephCure Champion Spotlight: Nicholas Ariyo

When I was 17, I was diagnosed with kidney disease called FSGS. This was 1 year after my little brother had been diagnosed with the same thing. While my brother was able to be managed on medication, mine was more malignant. It was not explained well to
me at the time so it was hard for my family and I to figure out why it was happening and what I did wrong to cause this. I was placed on heavy steroids and Myfortic. Due to the side effects of the steroids, I had a difficult time during my senior year of high
school.

Once I graduated, I went to Texas Tech to try and enter their fast-track medical school program. This was when I started to experience kidney failure. I was in denial about my symptoms and was thinking the swelling and fatigue were side effects of the
medications. I was so swollen my skin would literally tear open and streams of water would come out. It was only when my mom and sister begged me to go to the college clinic that I went and was told it was a miracle I was still alive and that I needed to go to the emergency room immediately. I flew back home and when my parents saw how swollen I was they bursted into tears. I was taken to the ER where they placed an emergency catheter to begin dialysis. I was told I had 40 liters of extra fluid in my body. I was now on hemodialysis 3 times a week for a few months before transferring to peritoneal dialysis. I immediately re-enrolled at the University of Houston. Between the adjustments to my life, school, and work, I was not keeping up with my treatments correctly, which led me to having a seizure in my dorm room, falling and hitting my head on the corner of my desk.

Luckily, I was rooming with my little brother so he was able to call an ambulance immediately. I was in a coma and the doctors said they had no idea if or when I would wake up. After three days, I woke up from the coma. Between this and college I was placed on probation at the University of Houston. I then transferred to Texas Southern University to finish my last year of college. After graduating, I was accepted into the Texas Southern University college of pharmacy where I also received my kidney transplant after 5 years on dialysis. I was told to withdrawal from school due to being behind in courses and needing to recover due to my health. But, fortunately my body healed quicker than expected and I was able to catch up and finish the semester on the Dean’s list.

A couple of years later my little brother progressed to kidney failure and then had to begin hemodialysis. He was not living with my parents at this time so between my mom and I, we would take him to his treatments. He then changed to peritoneal dialysis. After a few months and issues with his dialysis treatment he passed away in his apartment. I still feel guilty about not being able to provide him with more support during that time. This is why shedding light on the effects of rare kidney disease is a passion, not a pastime. I want to help others who were not as fortunate and blessed as I was to make it through so many obstacles and hardships, in whatever way possible.

— Nicholas Ariyo, 4th year Pharm.D candidate at TSU College of Pharmacy

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NephCure Applauds the Introduction of Federal Legislation to Improve Kidney Patient Access to Early Interventions, Improved Diagnostics & Access to Treatments

Washington, D.C., December 15, 2023 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today applauded the introduction of the New Era of Preventing End-Stage Kidney Disease Act H.R.6790 in the U.S. House of Representatives. The legislation is championed by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL) and represents a crucial step forward in our nation’s efforts to address rare kidney diseases through research, better diagnostics, and physician and patient education.

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”) is bipartisan federal legislation that will improve outcomes and quality of life for hundreds of thousands of Americans living with rare kidney disease (RKD) and their families. This legislation will support early intervention, improve access to better treatments, and reduce the physical, psychological, social, and economic impact of RKD through research, better diagnostics, and physician and patient education. The legislation will help mitigate the burden of rare kidney diseases on patients, families, and the health care system, laying the foundation for a new paradigm of proactive and effective kidney disease care.

“Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said Congressman Gus Bilirakis. “Through the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts, we will empower providers to better identify the signs and symptoms of rare kidney disease, which will lead to improved treatment options and better patient outcomes.”

“Far too many people living with rare kidney disease have trouble finding specialized care providers. Increasing awareness and education is crucial to caring for rare kidney disease patients, which is why I’m so proud to introduce the New Era For Preventing End Stage Kidney Disease Act. This legislation will make critical improvements to the way patients with rare kidney disease, especially those in underserved communities, access and receive care,” said Rep. Sewell.

“NephCure commends Congressman Gus Bilirakis (R-FL) and Congresswoman Terri Sewell (D-AL) for championing the New Era of Preventing End-Stage Kidney Disease Act and efforts to see a future in which improved diagnoses, access to treatments, and patient empowerment converge to reshape the trajectory of rare kidney diseases,” said NephCureCEO Joshua Tarnoff. “This bill can change how we take care of rare kidney disease patients through earlier detection and access to the right treatments, providing rare kidney disease education opportunities to doctors and patients, and allocating money for research. We are proud of the essential contributions the rare kidney disease community played in the development and introduction of the New Era of Preventing End-Stage Kidney Disease Act. We are committed to continue working alongside Congressman Bilirakis and Congresswoman Sewell to pass this important legislation in the 118th Congress.”

The New Era Act: A New Approach to Improve the State of Kidney Care

Reduce Kidney Failure. Mandates the U.S. Department of Health & Human Services (HHS) to evaluate treatment methods that would delay or eliminate the need for dialysis and transplant and provide legislative recommendations to Congress to support its findings.
Close the Gap for Underserved Communities. Directs HHS to make recommendations that would improve care in communities that have disproportionate rates of RKD. HHS will study a range of issues relating to early intervention, testing, and treatment, including access to kidney doctors, patient trust of their health care provider, and the utility, impact, and barriers associated with genetic testing.
Advance Research and Standard of Care. Creates regional Centers of Excellence on Rare Kidney Disease Research at the National Institutes of Health (NIH) which will support research, public awareness, and resources which could lead to innovative, less invasive treatments and possibly a cure for rare kidney diseases.
Enhance Provider Education. Establishes nephrology fellowships and provides continuing education and primary care training on RKD diagnoses and treatment. This training will enhance physician knowledge and increase the number of experts available to patients.
Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey.

Read the full text of H.R.6790 by clicking here.

NephCure encourages all of its community members to take action now by urging their Members of Congress to support the New Era legislation.

By the Numbers: The State of Kidney Care

Top 10 leading causes of death in the U.S. include kidney disease.
One in seven adults live with chronic kidney disease.
Nine in ten adults with chronic kidney disease are unaware of their condition.
The incidence of Focal segmental glomerulosclerosis (FSGS), a rare kidney disease, is around 5 times higher in Black patients when compared to white patients.
The annual cost for Medicare to treat kidney failure is $124.5 billion, which is driven by rare and chronic kidney disease.
Patients on dialysis spend around 12 hours a week connected to medical devices.

About NephCure

NephCure is a leading national patient advocacy organization dedicated to empowering people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney disease.

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Global Collaboration at PARASOL Project Enhances FSGS Clinical Trials and Hope of New Treatment Options

On December 9, 2023, researchers, doctors, regulators, and patients from across the globe met in Washington, D.C. at the Proteinuria and GFR as Clinical Trial Endpoints in Focal Segmental Glomerulosclerosis (PARASOL) Project to discuss developing biostatistical models that could help with the design of clinical trials and aid subsequent regulatory approval of new treatments for FSGS.

FSGS is a challenging disease to study because of the diverse patient population who experience different symptoms, response to treatments and rates of progression.

Two important things doctors measure are protein in the urine (proteinuria) and kidney function (eGFR). But these can fluctuate a lot in FSGS. At this meeting, the group discussed how to account for this variability in their statistical models of disease course.

PARASOL project attendees also considered what outcomes the models should predict, like kidney failure. Linking changes in proteinuria or GFR to these outcomes could help identify new treatments more quickly.

“We recognize the urgent need for innovative additonal approaches to study FSGS. As we navigate the complexities of this challenging disease, the collaboration among global experts is key. By developing precise mathematical models, we aim to not only categorize patient groups more effectively, but also better predict outcomes like kidney failure. The entire PARASOL team is committed to providing regulatory agencies and drug companies data driven and feasible tools for better clinical trials and testing new FSGS therapies,” Josh Tarnoff, NephCure’s CEO, said.

Participants agreed that to achieve these goals, they would need to bring together research datasets from all over the world to make sure that the models work for all patients with FSGS. By reviewing data, they hope to make decisions to start building initial models.

Their models aim to provide a practical tool for drug companies to design clinical trials that could test new FSGS therapies and improve options for patients.

The PARASOL project is sponsored by NephCure, International Society of Glomerular Diseases, National Kidney Foundation, and Kidney Health Initiative.

There are plans for researchers and doctors to attend a follow up PARASOL project in June 2024, and to present project outcomes at the American Society of Nephrology project in late 2024.

If you would like to get involved further with the PARASOL project, or have additional questions, please direct all inquires to info@nephcure.org.

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NephCure Provides Kidney Disease Screenings at Enon Tabernacle’s Community Health Event

On November 11th, NephCure with CARE and JUSTICE, an NIH-funded registry and clinical trial, had the great privilege of joining Enon Tabernacle Baptist Church’s 2nd annual “Women Know Your Numbers” health screening event in Philadelphia, PA. The event provided more than 300 women with screenings for proteinuria and testing for the APOL1 genotype.

Black Americans are 3-4 times more likely to develop kidney failure than white Americans. APOL1 is a genetic form of kidney disease that primarily impacts individuals of African descent. APOL1 researchers believe that up to 40% of Black Americans on dialysis have APOL1-related kidney disease.

“This initiative is all about tackling the disproportionate burden of kidney disease on the Black community. It’s not just about finding the problem at the screening event, it’s about getting people connected to early interventions that target genetic causes and connecting them to a primary care physician if they do not have access to one,” Montrez Lucas, NephCure’s Associate Director, Patient Navigation, said.

“This event provides hope— breaking disparities, and empowering communities through knowledge. It’s a commitment to lasting impact on kidney health.”

By offering these screenings, NephCure is able to help identify individuals with all causes of chronic kidney disease earlier in their journey so they can be connected to new treatments that can significantly improve their overall kidney health and prevent or delay dialysis.

If you were not able to attend this health screening event in Philadelphia, you may still be able to get genetic testing at no-cost to you.

Individuals who meet the following criteria are eligible for no-cost to patient testing programs:

African ancestry, including those who self-identify as Black, African American, African, Afro-Caribbean, Hispanic, or Latino
Not on dialysis and no history of kidney transplant
Diagnosed with chronic kidney disease (CKD), end stage renal disease (ESRD), or has presence of protein in urine (proteinuria)
Does not have diabetes

These genetic testing programs can help raise awareness about the genetic causes of kidney disease in the Black community and reduce some barrier associated with genetic testing. Click here to learn more about each genetic testing program.

Thank you to Vertex Pharmaceuticals for sponsoring our RKD Screening Campaign efforts.

If you have questions are don’t quality for the no-cost test, but are still interested in genetic testing, contact NephCure at info@nephcure.org or 1-866-NephCure (637-4287).

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NephCure Champion Spotlight: Paul Billedo

“Hello, my name is Paul Billedo. I am a 31-year-old Filipino American from San Francisco, CA. I was diagnosed with IgAN in 2018, and it changed my life in many ways. I tackle opportunities differently, I learned to keep moving forward no matter what the end of the road looks like, and I am learning to love every little thing life gives me.

I feel very grateful that I respond to treatment and that I am part of a great community where I can give and get support. I went through many stages of feelings because of my disease. Moving from feeling hopeless to grateful and happy!

I remember the period when I got diagnosed because it came out of nowhere and it changed my life. With 20 pounds of water weight from the waist down and doing 4 weeks of blood tests, I finally got diagnosed with IgA nephropathy.

I met my wonderful nephrologist that explained everything to me from my feelings, her feelings, our relationship, and treatment. I remember it was very real when I got a biopsy and stayed in the hospital for 24 hours to make sure I don’t have an internal bleeding. That is when I came in touch with reality because it feels like a dream.

Throughout the past five years of being diagnosed, I went through a couple of phases with my medication. In the very beginning, I was on Lasix to get the 20 pounds of fluid out of my system, Prednisone, Lipitor, and Prilosec. Before starting on this medication, my doctor explained to me what the medications are and made sure that I am okay with taking them because she stated that there are not many medications that are for my disease. After her explanations, I agreed to the Prednisone and I handled the medication very well. As I was on medication for a year, my doctor wanted to wean me off Prednisone because of the long time effect it has on the body. We got my Prednisone to a very low dosage and was able to be in remission for about 9 months, before I would relapse.

We brought my dosage back up to normal and weaned down again, but at a way slower rate and more blood work. After about a year, I relapsed again and decided to not go as low on the third attempt. The third phase, we got the dosage as low as possible without any relapse.

About my fourth year with my disease, my doctor asked me if I wanted to try a different medication to get me off of Prednisone completely. That’s when she introduced Tacrolimus. I am taking 2mg of Tacrolimus and going strong.

Now, I am so happy to finish my teaching credential to become an elementary school teacher. It is hard to chase my goals and dreams because my disease held me back a few times because of sudden relapses, feeling extra tired from stress, and getting sick more often. I learned to keep pushing through because it is worth it. I am worth it no matter what I have. I do still live my life forgetting that I have a major disease and that does cause some complications. I lose grip of my eating habits, drinking habits, mental health, and physical health and feel bad on taking advantage of my health. It is hard to keep things consistent when I feel normal when in reality, I have a chronic disease. It will be a forever battle, but I trained my mind to be ready for anything.”

— Paul Billedo

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NephCure Champion Spotlight: Anthony Pisa

Anthony Pisa was officially diagnosed with IgA nephropathy (IgAN) at 51 years old through a kidney biopsy completed in August 2019. His condition presented itself during a high blood pressure episode which was abnormally related to his medical history.

Anthony was part of an HMO program (a certain type of health insurance plan) for years and decided to leave due to the lack of attention to his health. He chose a PPO (preferred provider organization), and when he visited his new primary care physician about his blood pressure, his primary doctor recommended seeing a nephrologist based on Anthony’s and his family’s medical history. This was the first time he was ever recommended to see a kidney specialist in his life, even though he suffered from bouts of gout (no family history) and inconsistent blood labs in his early forties.

Anthony’s father dealt with kidney-related issues and received a transplant at 52 years old. This history was shared with all preceding hospitals and primary care physicians, and at no time throughout this journey, was there a deep dive into finding out if there were any hereditary concerns.

The nephrologist quickly reviewed historical labs and ordered new ones. He found that there had been a long slow trend of protein spillage. He quickly asked Anthony to get a biopsy so they could identify exactly what was going on.

Once diagnosed, the option given was diet, steroids, or potentially, a clinical trial. Steroids did not seem like a good option, so the focus was on diet and trying to get into a trial. Unfortunately, this all happened during the beginning of the Covid-19 outbreak, and Anthony had to wait to travel to from Seattle, WA to California to visit Stanford Hospital, where the trial was based. Four months passed, and it was decided to take the risk to attempt to get into the trial. Unfortunately, Anthony’s eGFR result was 1 point under the trial’s cutoff at 30, this was very disappointing. So therefore, he went back to Seattle to discuss other potential options, which did not produce viable results.

In July 2021, Anthony’s eGFR levels fell to 6, thus, he decided to conduct peritoneal dialysis. During this time, many of his family members were going through the process of being screened as kidney donors. In October 2021, he was truly fortunate to find a match in his cousin and received a kidney transplant in November 2021.

As of January 2023, Anthony is doing well and continues to focus on his personal health. He enjoys supporting and helping others as well. He is glad NephCure has been available to him and his family. NephCure’s resources have been extremely helpful in supporting decisions along Anthony’s journey.

To help continue to raise awareness about rare kidney disease, share your story with NephCure here.

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2023 Rare Kidneys on the Hill Day Success, Largest Event in Organization History

On July 12, NephCure hosted its Rare Kidneys on the Hill Day to raise awareness and advocate for legislative change to improve the lives of rare kidney disease (RKD) patients and their families. The event included meetings with Members of Congress and legislative staff, an in-person congressional briefing on NephCure policy priorities and initiatives, and networking opportunities for patients and their families. Sixty-one advocates from 20 states traveled to Washington, D.C. to participate in the annual fly-in, marking the largest in-person NephCure Hill Day ever.

NephCure’s Hill Day was preceded by a Rally Dinner on July 11, where advocates gathered to prepare for their congressional meetings, learn about urgent policy priorities impacting the rare disease community, and share stories about what inspires them to advocate. During the dinner, NephCure presented the Advocate of the Year award to Kimberly Queen, an RKD patient and advocate from Georgia.

The following day, advocates and NephCure staff conducted over 70 in-person meetings with staff from congressional offices in the U.S. House of Representatives and U.S. Senate, including the offices of Sen. Tammy Baldwin (D-WI), Sen. Bob Casey (D-PA), Sen. Bill Cassidy (R-LA), Sen. Patty Murray (D-WA), Sen. Tim Scott (R-SC), Sen. Debbie Stabenow (D-MI), Sen. Jon Tester (D-MT), Sen. Elizabeth Warren (D-MA), Rep. Gus Bilirakis (R-FL, 12), Rep. Lisa Blunt Rochester (D-DE, AL), Rep. Larry Bucshon (R-IN, 08), Rep. Suzan Delbene (D-WA, 01), and Rep. Teri Sewell (D-AL, 07).

During the Hill Day, NephCure also hosted a congressional briefing on the New Era of Preventing End-Stage Kidney Disease Act, a bill which is expected to be reintroduced in Congress in the near future. The briefing covered information on the unique role played by NephCure in uniting kidney disease stakeholders to find treatments and cures for RKD, the prevalence, patient impact, and significant cost of kidney disease, and how the New Era Act will improve the state of kidney care in America. NephCure is working closely with House champion offices on the reintroduction of the New Era Act.

“We are now at a point where the cost of not treating kidney disease is more expensive than treating the disease. Let’s not let 22 years of science and research go to waste because of lack of access,” said Joshua Tarnoff, NephCure’s CEO.

The hour-long event was moderated by Joshua Tarnoff, NephCure’s CEO, and included presentations from the following individuals:

Kelly Helm | Executive Director of Patient Engagement, NephCure
Laura Mariani, M.D. | University of Michigan, Division of Nephrology
Colleen White | Health Legislative Assistant, Office of Rep. Gus Bilirakis (R-FL, 12)
Imani Mintz | RKD Patient and NephCure Volunteer
Becca Garcia | Caregiver to Bria, her daughter who has RKD

You can watch the congressional briefing here.

NephCure develops Rare Kidneys on the Hill Day programming and policy priorities in accordance with its mission and in collaboration with the patient community.

Support for NephCure’s Rare Kidneys on the Hill Day 2023 was generously provided by platinum sponsors Calliditas Therapeutics, Novartis, and Travere Therapeutics, silver sponsors Boehringer Ingelheim, Chinook Therapeutics, and Vertex, and bronze sponsor, Otsuka.

View all photos from our Rare Kidneys on the Hill Day here.

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NephCure to Host Largest Rare Kidneys on the Hill Day

Rare kidney disease bill poised to be reintroduced

KING OF PRUSSIA, Pa. (JULY 6, 2023)— Sixty-five rare kidney disease (RKD) patients and caregivers are traveling from 21 states to Washington, D.C. next week to participate in NephCure’s annual Rare Kidneys on the Hill Day, marking the highest in-person attendance to date for the event. On July 11 and 12, these advocates will meet with their members of Congress to push for more research funding, enhanced diagnostics, and increased access to innovations in treatments and care. Chief among the advocates’ requests will be urging support for the New Era of Preventing End-State Kidney Disease Act, a bill which is expected to be reintroduced in Congress in the near future.

“We are honored to be joined by a record number of patients and families this year,” said Josh Tarnoff, NephCure’s Chief Executive Officer. “Sharing their personal stories with their representatives in Congress is critical to making policy changes that improve rare kidney disease patient care. The patient voice is vital to our efforts as a community.”

Rare Kidneys on the Hill Day kicks off on July 11 with a Rally Dinner, providing participants an opportunity to connect with fellow RKD advocates and practice for their meetings.

The following day, July 12, participants will meet with members of the House of Representatives and Senate to build relationships and educate members on rare kidney disease issues. In addition, participants will attend a Congressional Briefing and lunch designed to educate members and their staff on RKD issues.

A primary focus during advocate meetings will be to urge support for the New Era of Preventing End-Stage Kidney Disease Act. The bill was developed in collaboration with rare kidney disease stakeholders and introduced in the 117th Congress. Building on the momentum from the previous Congress, the bill is expected to be reintroduced this Congress and will be led by key congressional champions.

The bill would improve, develop, and deliver health care services to people with rare kidney disease by supporting research and promoting early intervention and diagnostic protocols; addressing health disparities in rural and disproportionately affected communities; and enhancing provider education. Together these interventions will improve kidney health outcomes and reduce dialysis and transplantation costs. The US government spends $130 billion annually on patients with kidney disease—nearly a quarter of Medicare’s total budget.

Other policy asks made by advocates will include the following: Increase NIH and CDC funding for medical research and education and awareness activities, continue to include focal segmental glomerulosclerosis and nephrotic syndrome in defense research funding, cosponsor the Living Donor Protection Act of 2023 H.R. 2923/S. 1384, cosponsor the Safe Step Act, H.R. 2630/ S. 652, and cosponsor the HELP Copays Act H.R. 830/S. 1375.

NephCure develops Rare Kidneys on the Hill Day programming and policy priorities in accordance with its mission and in collaboration with the patient community.

Support for NephCure’s Rare Kidneys on the Hill Day 2023 is generously provided by platinum sponsors Calliditas Therapeutics, Novartis, and Travere Therapeutics, silver sponsors Boehringer Ingelheim, Chinook Therapeutics, and Vertex, and bronze sponsor, Otsuka.

All rare kidney disease community members are encouraged to participate from home throughout the week by following @NephCure and sharing their RKD stories using #RKDWeek2023.

To learn more about NephCure’s Rare Kidneys on the Hill Day, visit resources.nephcure.org/hillday2023.

About NephCure:

NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a US tax exempt 501(c)(3) public charity.

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NephCure Champion Spotlight: Jazrome “AJ” Coulter

Jazrome was diagnosed at the age of 29. The onset of the diseased started when he was 27, resulting in him to be hospitalized for irregular heartbeat. His blood pressure at the time was 234/176 when recorded from his right arm, yet 99/78 when placed on his left arm. Initially, the doctors were going to discharge him. However, the medical team ordered a kidney biopsy that resulted in him being then diagnosed with stage 4 kidney disease. A year later his kidneys would fail and Jazrome spent six years on dialysis. This information is vital to his story: he didn’t discover he had FSGS until his third year of dialysis.

Jazrome remembers playing football in college and at the time weighing 250 lbs and could bench 585 pounds! Just to give you an idea of his size and the toll dialysis took on his body— today he weighs 165 pounds (170 pounds on a cheat day). He would give plasma during the week and the doctors would tell him that he was spilling protein. Jazrome never thought anything of it, until it started affecting his football career. He was only 22. Jazrome reports that due to his lack of knowledge regarding his diagnosis, he has so much respect for organizations like NephCure.

“Education and research can truly save lives. While also allowing patients and caregivers to live more comfortable lives. I had very little understanding of FSGS. Maybe, if I had the resources that are offered today, I could have avoided the transition from stage 4 to stage 5,” Jazrome said.

He recalls one summer he went to the hospital 26 consecutive times and at one point he suffered from a collapsed lung. However, last year, Jazrome received “the gift of life,” a new kidney! But he still has endure kidney-related issues as well as numerous medications and side-effects.

Jazrome is currently a touring comedian and works with 7 kidney organizations worldwide! He also has a non-profit named Diseased Jokes where he builds comedy benefits and raises money for different chronic-illness organizations. He is also the self-proclaimed “kidney comic” and wants to raise more awareness about FSGS. In his comedy set, he educates, motivates, and gives hope through humor.

To help continue to raise awareness about rare kidney disease, share your story with NephCure here.

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NephCure and MedLive Offering Free Webinar on IgA Nephropathy

NephCure is teaming up with MedLive to offer a new, live webinar focused on IgA nephropathy (IgAN). Register to join us on Tuesday, June 20 at 3 p.m. ET for “Knowledge Is Power: The Information You Need to Recognize Your Risk and Early Signs of Kidney Disease and Take Action to Optimize Your Treatment.” MedLive is an online education platform dedicated to providing reliable health information that supports shared decision-making with care teams and improved health outcomes.

Featuring an expert panel comprised of a nephrologist, patients, and patient advocates, this presentation will cover how to get an early diagnosis, what the experts say about IgAN, the ins-and-outs of the available treatment options, and what discussions to have with your doctor. They’ll also explore the role of the kidneys and discuss why early kidney screenings are critical to ensuring medical care begins before any irreversible loss of kidney function occurs.

Dr. Michelle O’Shaughnessy, Consultant Nephrologist at University Hospital Galway in Ireland, will present. At the end of the presentation, the panel will take questions from the audience in a live Q&A.

Experts recommend certain strategies for managing IgAN, such as reducing proteinuria and controlling blood pressure. These strategies aim to save your kidneys and delay the disease progression. There are also newer medications that may help with IgAN and pipeline agents that may help delay the need for dialysis.

“Our goal is to empower patients with the information they need to make informed decisions about their care and preserve the health of their kidneys,” said Kelly Helm, NephCure’s Executive Director of Patient Engagement. “We invite everyone to join us for this free webinar to learn about IgAN and how you can take control of your kidney health!”

Learn more and register for the webinar here.

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Travere Therapeutics Announces Results from DUPLEX Study in FSGS

KING OF PRUSSIA, Pa. (MAY 2, 2023) — Travere Therapeutics announced Monday results from their Phase 3 DUPLEX Study, which tests the drug sparsentan in focal segmental glomerulosclerosis (FSGS) patients. While the DUPLEX Study did not achieve its primary endpoint goal for eGFR, the results of its secondary endpoints provide encouragement.

At the end of the 108-week long study, the eGFR total slope compared to the control drug, irbesartan, did not reach its goals to show statistical significance. However, the results also showed:

An average of 50% reduction in proteinuria during the treatment.
More than 2x greater remission rate — 18% of patients on sparsentan achieved complete remission, vs. only 7% on irbesartan.

The results from the DUPLEX Study also indicated that sparsentan was well-tolerated, with a consistent safety profile comparable to irbesartan. Additionally, patients anecdotally reported a reduction in edema (more information on this to come as additional data is published).

“FSGS is a particularly aggressive form of kidney disease that currently does not have any FDA-approved treatments. There is a high unmet need for treatment options for those affected by FSGS. Ensuring patients have choices about the medications they take is of the utmost importance,” said Josh Tarnoff, NephCure’s CEO. “NephCure has always stressed the significance of stopping the disease and reducing protein in the urine — and sparsentan is showing to do that based on these results.”

According to Travere Therapeutics, the company will continue to explore a potential path forward with the FDA for a New Drug Application (NDA). To learn more about the DUPLEX Study results, read Travere’s press release here.

To see a full list of clinical trials in the rare kidney disease space, visit KidneyHealthGateway.com.

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NephCure Joins Enon Tabernacle’s Men’s Health Initiative

Brings Kidney Disease Screening and APOL1 Genetic Testing to Event

KING OF PRUSSIA, PA (APRIL 19, 2023) — NephCure, a nonprofit focused on finding better treatments and a cure for rare kidney disease (RKD), is partnering with Enon Tabernacle Baptist Church as they host their 12^th annual “Men Know Your Numbers” health education and screening event on April 22 from 8 a.m. to 6 p.m ET.

During the event, the Church, located at 2800 W. Cheltenham Ave. in Mount Airy, transforms their house of worship into a men’s health and wellness clinic. This year, NephCure is working with the University of Pennsylvania chapter of the Kidney Disease Screening and Awareness Program to offer on-site urine screening for kidney disease. Additionally, in collaboration with Labcorp, NephCure will bring the first-ever genetic testing opportunities for APOL1 kidney disease, a recently discovered rare condition that puts 1 in 8 Black and African Americans at risk for a genetic form of kidney disease.

The event with Enon Tabernacle also serves as the kick-off of NephCure’s RKD Screening Campaign, an ongoing effort to provide kidney disease education and screening opportunities in targeted locations nationwide. NephCure also works closely with local nephrologists who are experts in rare kidney disease to assist and oversee screening events and provide connections to clinical research opportunities and innovative treatment options. NephCure is proud to recognize Travere Therapeutics as a Platinum Partner of NephCure’s RKD Screening Campaign. Additional sponsorship support has been provided by Boehringer Ingelheim, Natera, and Mallinckrodt Pharmaceuticals.

“Collaborations work! It has been our experience over the years when we partner with others of like mind, outcomes are improved. NephCure’s mission which includes addressing healthcare concerns upstream, aligns with our commitment to be proactive and preventative in our approach to health and wellness. This type of creative collaboration has yielded very positive results. We believe in holistic care the mind, the body, and the spirit,” the Rev. Leroy Miles said, Enon Tabernacle’s Associate Pastor of Sanctification.

APOL1 kidney disease is particularly aggressive and currently has no FDA-approved treatments. It primarily affects individuals of African descent.

Enon Tabernacle’s “Men Know Your Numbers” health education and screening event welcomes all men over the age of 18 to participate and receive free screenings for not only kidney function, but also for blood pressure, cholesterol, blood sugar, prostate cancer, colon cancer, mental health, and more. In addition to the health and wellness portion of the event, a “man cave” will also be set up which includes video games, card games, and free barber services.

To learn more about the event, visit EnonTab.org. For more information about APOL1 kidney disease, visit NephCure.org.

About NephCure:
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

About Enon Tabernacle:
Enon Tabernacle Baptist Church is a congregation of over 12,000 members. Enon holds two weekend worship services (with internet live-streaming), multiple prayer opportunities, and weekly Bible studies in the Mt. Airy and Germantown sections of Philadelphia. Reverend Dr. Alyn E. Waller, Senior Pastor draws on his love for people to shape God’s vision for Enon, “A Place Where People Encounter God,” through over 75 innovative ministries. Enon regularly hosts various community awareness events and health and wellness initiatives that offer critical health screenings, including exposure to cutting edge medical innovations.

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