NephCure Wins Gold at the 2nd Annual Anthem Awards February 15, 2023 by Kylie Karley Honored for Best Health Nonprofit Campaign KING OF PRUSSIA, Pa. (Feb. 15, 2023) – NephCure is excited to announce the organization’s awareness campaign, ‘On the Rebound: Alonzo Mourning’s Kidney Disease Journey,’ is a Gold Winner in the 2nd Annual Anthem Awards in the Health Nonprofit category. Chronic kidney disease (CKD) is a national epidemic, with more than 1 in 7 U.S. adults affected. People of color are disproportionately affected by CKD due to genetic risk factors, as well as social determinants of health. APOL1-related kidney disease, caused by a mutation on the APOL1 gene, is an especially aggressive form of CKD—approximately 40% of African Americans on dialysis have kidney failure caused by APOl1. In highlighting Alonzo Mourning’s personal kidney disease story, NephCure aimed to reach those who are at risk for CKD, raise awareness of rare forms of kidney disease, and educate the public, especially the Black community, about the signs and symptoms of these conditions for earlier diagnoses and treatment. After creating the video with Mourning in the fall of 2021, NephCure launched a digital campaign in December 2021 in support of their Health Equity Initiative and awareness campaign, sharing the video as well as informational resources to help people better understand their risk and disease management. The campaign was distributed via Instagram, Facebook, and YouTube, and focused on the 5-minute video of Mourning telling his own story of being diagnosed with kidney disease just after playing in the 2000 Olympics. He shares his kidney disease journey, the physical and emotional impact, and his advice for others at risk. “Since launching this platform in June of 2021, we have seen that social change has emerged as a dominant force in mainstream culture,” said Jessica Lauretti, Anthem Awards Managing Director. “The sheer number, breadth and overall quality of the entries shared with us in the 2nd Annual Awards is a testament to the strength of this growing movement and demonstrates an enduring commitment to the work that is both humbling and inspiring to see. From the war in Ukraine, to protests in Iran and the ongoing battle for equality here at home in the States, the call for change not only perseveres but is a growing global chorus.” The Gold Anthem Award is accepted by the NephCure team members who led this campaign— Kylie Karley, Director of Marketing and Communications, and Delaney Geraghty, Manager of Marketing and Communications. “It’s an honor, and incredibly humbling, to be recognized by the Anthem Awards for the work we’ve been doing to raise awareness of the risk for CKD and APOL1-related kidney disease. We are passionate about ensuring equitable kidney health care for everyone, everywhere, and know our work in this space does not end here, but rather only begins,” said Karley. Winners for the 2nd Annual Anthem Awards will be celebrated at the Winners Celebration on Feb. 27 in New York City. Fans can hear from social impact leaders and listen to their hallmark speeches at www.anthemawards.com. The Anthem Awards was launched in response to the prevalence social good has taken within the national conversation and cultural zeitgeist in recent years. The 2nd Annual competition received nearly 2,000 entries from 43 countries worldwide. By amplifying the voices that spark global change, the Anthem Awards are defining a new benchmark for impactful work that inspires others to take action in their communities. A portion of program revenue will fund a new grant program supporting emerging individuals and organizations working to advance the causes recognized in the 2nd Annual Anthem Awards. Anthem Winners are selected by the International Academy of Digital Arts and Sciences. Members include: Nicholas Thompson, CEO, The Atlantic, Christina Swarns, Executive Director, Innocence Project, Zarna Surti, Global Creative Director, Nike Purpose, Maurice Mitchell, National Director, Working Families Party, Lindsay Stein, Chief Purpose Office, Tombras, Jennifer Lotito, President & Chief Operating Officer, (RED), Lisa Sherman, President & CEO, The Ad Council, Emily Barfoot,Global Brand Director Dove, Unilever, Trovon Williams, Senior Vice President of Marketing and Communications, NAACP, Roma McCaig, Senior VP of Impact, Clif Bar, Michelle Egan, Chief Strategy Officer, NRDC, Dinah-Kareen Jean, Senior Manager, Social Innovation, Etsy, Sarah Kate Ellis,President & CEO, GLAAD, Jad Finck, Vice President of Innovation & Sustainability, Allbirds, Christopher Miller, Head of Global Activism Strategy, Ben & Jerry’s, Shayla Tait, Director of Philanthropy The Oprah Winfrey Charitable Foundation. About NephCure: NephCure’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, and other forms of rare, protein-spilling kidney disease, and to provide education and support that will improve the lives of those affected by these conditions. 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 more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. About The Anthem Awards: Launched in 2021 by The Webby Awards, The Anthem Awards honors the purpose & mission-driven work of people, companies and organizations worldwide. By amplifying the voices that spark global change, we’re defining a new benchmark for impactful work that inspires others to take action in their own communities. The Anthem Awards honors work across seven core causes: Diversity; Equity & Inclusion; Education; Art & Culture; Health; Human & Civil Rights; Humanitarian Action & Services; Responsible Technology; and Sustainability, Environment & Climate. Founded in partnership with the Ad Council, Born This Way Foundation, Feeding America, Glaad, Mozilla, NAACP, NRDC, WWF, and XQ. About The Webby Awards: Hailed as the “Internet’s highest honor” by The New York Times, The Webby Awards is the leading international awards organization honoring excellence on the Internet, including Websites; Video; Advertising, Media & PR; Apps, Mobile, and Voice; Social; Podcasts; and Games. Established in 1996, The Webby Awards received more than 13,500 entries from all 50 states and 70 countries worldwide this year. The Webby Awards are presented by the International Academy of Digital Arts and Sciences (IADAS). Sponsors and Partners of The Webby Awards include Verizon, WP Engine, YouGov, Brandlive, Canva, NAACP, KPMG, Fast Company, Wall Street Journal, MediaPost, Podcast Movement, and AIGA.
NephCure Kidney International Announces New Scientific Advisory Board Co-Chairs December 12, 2022 by Kylie Karley KING OF PRUSSIA, Pa. (Dec. 12, 2022) — NephCure Kidney International (NephCure) is excited to announce new co-chairs for the organization’s Scientific Advisory Board (SAB): Alessia Fornoni, M.D., Ph.D., and Matthias Kretzler, M.D. Alessia Fornoni, M.D., Ph.D. Drs. Fornoni and Kretzler, expert glomerular disease nephrologists who actively serve on NephCure’s SAB, will assume the roles of co-chairs following the term completion of former chairman Martin Pollak, M.D. “Dr. Fornoni and Dr. Kretzler have been indispensable partners of NephCure and the rare kidney disease research and care community, and we’re honored that they have agreed to lead our SAB,” said Josh Tarnoff, NephCure CEO. “Their combined ‘extensive research bench to bedside care’ experience and expertise have provided tangible progress and hope to the kidney community, an integral part of our mission. We are grateful for their passion and leadership to help push glomerular disease research and treatment forward.” Dr. Fornoni is a Professor of Medicine and Molecular and Cellular Pharmacology at the University of Miami Miller School of Medicine. She is the Chief of the Katz Family Division of Nephrology and Hypertension and serves as and Director and Chair of the Peggy and Harold Katz Drug Discovery Center. Through her pioneering work on insulin signaling, cholesterol metabolism and sphingolipid-related pathways, Dr. Fornoni uncovered novel pathogenetic mechanisms and therapeutic approaches for glomerular disorders. Dr. Kretzler is the Warner-Lambert/Parke-Davis Professor of Medicine/Nephrology and Computational Medicine/Bioinformatics at the University of Michigan. For the last 35 years of his life, he has focused his research efforts on studying glomerular failure and finding novel ways to treat it. Dr. Kretzler’s work has helped to redefined glomerular diseases in mechanistic terms. This framework is a driving force to develop and test novel precision medicine strategy for people with kidney disease, and hopefully bring the right drug to the right patient at the right time. Matthias Kretzler, M.D. Dr. Pollak, the previous chairman of the SAB, is a leader in the research of the genetic basis of rare kidney disease. His research lab discovered the genetic tie between people of African descent and focal segmental glomerulosclerosis (FSGS), a groundbreaking finding that has helped explain why Black Americans have a higher risk of kidney disease. Dr. Pollak continues working to identify genes involved in the development of FSGS in minority populations. Although he will be stepping down as chairman, Dr. Pollak will continue to sit on the SAB and serve the rare kidney disease community. Rare kidney disease is experiencing a revolution in research breakthroughs, care, and significantly expanded interest, which has led to NephCure’s responsibilities and programming significantly increasing. The addition of co-chairs reflect this important role to the SAB not only due to the responsibilities hosted in the position, but to help pave a way for new research in the kidney community. To receive more NephCure news and updates, sign up for our monthly newsletter here. About NephCure Kidney International NephCure Kidney International’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, and other forms of rare, protein-spilling kidney disease, and to provide education and support that will improve the lives of those affected by these conditions. 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 more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.
Travere Therapeutics’ Sparsentan Drug Explained November 23, 2022 by Kylie Karley What is sparsentan and how is it taken? Sparsentan is a novel Dual Endothelin Angiotensin Receptor Antagonist (DEARA) being studied as a potential treatment option for immunoglobulin A (IgA) nephropathy and focal segmental glomerulosclerosis (FSGS). In clinical trials, sparsentan is being given as a tablet or age-appropriate liquid taken by mouth. What is the next step in the approval process? The U.S. Food and Drug Administration (FDA) has confirmed the Prescription Drug User Fee Act (PDUFA) target action date for sparsentan in IgA nephropathy is February 17, 2023. Can you describe the patients in the DUPLEX and PROTECT studies? DUPLEX and PROTECT are ongoing Phase 3 clinical trials studying the efficacy and safety of sparsentan. The DUPLEX study includes 371 patients, ages 8 to 75 years, with primary FSGS. The PROTECT study includes 404 patients, ages 18 years or older, with IgA nephropathy and persistent proteinuria despite angiotensin-converting enzyme (ACE) inhibitor or angiotensin receptor blocker (ARB) therapy. Can you explain to our patients how sparsentan reduces proteinuria? The amount of protein found in the urine (called proteinuria) is seen as a marker of kidney function. Lowering proteinuria levels is associated with better kidney health outcomes. Pre-clinical data have shown that blocking both endothelin type A and angiotensin II type 1 pathways, in forms of rare chronic kidney disease, reduces proteinuria. In the PROTECT study, after 36 weeks of treatment, patients receiving sparsentan experienced a greater than threefold reduction of proteinuria from baseline (49.8 percent) compared to the active control irbesartan (15.1 percent). How is sparsentan different from other treatment options? Sparsentan is different from other medications because it is non-immunosuppressive and it is dual-acting (combines two mechanisms of action into one molecule). It selectively blocks the action of two important mediators of progression to kidney failure (endothelin type A and angiotensin II type 1) at their receptors. Can you give us an update about the use of sparsentan for FSGS patients? Travere Therapeutics anticipates having topline data from the DUPLEX study, including full two-year estimated glomerular filtration (eGFR) data, in the first half of 2023. The company is planning to pursue traditional approval of sparsentan for FSGS in the United States in 2023 and Conditional Marketing Authorization in Europe. What’s next for Travere Therapeutics? Travere Therapeutics is dedicated to working with the rare disease community to identify, develop, and deliver life-changing therapies. In addition to the development efforts for sparsentan in IgA nephropathy and FSGS, the company is advancing pegtibatinase for the treatment of classical homocystinuria, a genetic metabolic disorder that can cause life-threatening thrombotic events. In addition, early research efforts include partnering with leaders in patient advocacy and government research to identify potential therapeutics for Alagille syndrome, a rare genetic disorder that can affect the liver, heart, skeleton, eyes and kidneys. Where can patients with more questions go to find answers? For more information, patients should talk to their healthcare provider and can visit travere.com, rkdandme.com, navigateigan.com, or lowerproteinuria.com.
Travere Therapeutics, the IgA Nephropathy Foundation, and NephCure Kidney International Partner to Launch RKD & Me, a Campaign to Raise Awareness of Rare Kidney Disease November 15, 2022 by Kylie Karley Developed in collaboration with the rare kidney disease community, RKD & Me aims to amplify the experiences of people living with rare kidney disease. SAN DIEGO, Nov. 15, 2022 – Travere Therapeutics, Inc., the IgA Nephropathy Foundation, and NephCure Kidney International today announced the launch of RKD & Me, a new public awareness campaign that spotlights the real stories of people living with rare kidney disease to amplify their unique lived experiences, educate the public, and empower the newly diagnosed. With first-hand input from the rare kidney disease community gleaned from nationwide listening tours, the RKD & Me campaign further establishes the acronym, RKD, and provides a common space for those living with rare kidney disease to share their experiences on RKDandMe.com. In a world where millions of people live with chronic kidney disease, commonly known as CKD, it is estimated that only 60-80 per 100,000 people in the United States currently live with rare kidney disease (RKD). Due to low public awareness, people living with rare kidney disease can face challenges in getting diagnosed and finding support. “Rare kidney disease often presents with unique symptoms or no symptoms and can progress to end-stage kidney disease much faster than other forms of kidney disease,” said Kelly Helm, executive director of patient engagement at NephCure Kidney International. “This makes the experiences of people living with RKD substantially different from those with more common forms of CKD.” As part of the nationwide listening tour, the RKD community shared letters they penned to their younger selves recounting their experiences, offering words of advice and encouragement, and emphasizing the need for RKD to be delineated from other, more common kidney diseases. They also shared stories on how RKD intersects with every facet of their lives – including relationships, parenting, career and day-to-day activities. “By amplifying the personal letters and stories of the RKD community, the RKD & Me campaign will help people living with RKD learn from the experiences of others and find comfort in camaraderie as they navigate their journeys,” said Bonnie Schneider, director and co-founder of IgA Nephropathy Foundation. The RKD community’s letters are a focal point of this year’s launch and will continue to shape the multi-year campaign in the future. Anyone with an authentic connection to rare kidney disease is encouraged to submit a letter on RKDandMe.com to support raising awareness of RKD. “Through the listening tours and the letters, the RKD community shared about the realities of making space in their lives for rare kidney disease, and they also shared their strength, perseverance, and commitment to making their voices heard,” said Eric Dube, president and CEO of Travere Therapeutics. “Along with our partners NephCure and IgA Nephropathy Foundation, we hope the RKD & Me campaign will provide a much-needed platform that recognizes, celebrates, and elevates the unique experiences of people living with RKD.” To check out the powerful words of people living with RKD and submit your own letter, visit RKDandMe.com or follow #RKDandMe on social media. To learn more about rare kidney diseases and other ways to support people living with RKD, visit IgAN.org and NephCure.org. 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 travere.com. About IgA Nephropathy Foundation As the only dedicated patient advocacy group for people affected by IgA nephropathy, the IgA Nephropathy Foundation’s mission is to be a patient-centric organization focused on finding a cure for IgA nephropathy. Using the power of the patient community we are focused on funding research, using patient advocacy to empower our patients, and building a network of support. As a patient-run organization, we will work together with the hope of finding better treatment options and the ultimate cure. By patients, for patients. To learn more, visit www.IgAN.org. About NephCure Kidney International NephCure Kidney International’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases, and to provide education and support that will improve the lives of those affected by these conditions. 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 more than 50 interventional drug trials for primary glomerular kidney diseases. To learn more, visit www.NephCure.org.
On the Move 2022 August 29, 2022 by Kylie Karley Leave a Comment Break out your sneakers, bicycle, hiking boots, roller skates, or anything to get on the move and join our 2022 On the Move virtual challenge! Anyone can register for NephCure’s fun-filled remote fundraising challenge to get moving and help us reach our goal of $30,000 to support rare kidney disease patients and families. All proceeds will go toward advancing NephCure’s mission of finding better treatments and a cure for Nephrotic Syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. On the Move runs from October 1-31. You can run, walk, bike, swim, rollerskate, kayak — anything! Visit give.nephcure.org/onthemove2022 to learn more and register.
NephCure Participates in Black Health Matters Summit and Health Fair: Rare Kidney Disease Across Generations Panel August 4, 2022 by Kylie Karley HOUSTON, TX (August 4, 2022) – NephCure Kidney International (NephCure) is hosting a panel discussion, “Men’s Health: Rare Kidney Disease Across Generations,” during the Black Health Matters Summit and Health Fair on August 6th in Houston, TX. Black Health Matters, a non-profit focused on improving the health and wellness of Black and BIPOC communities, hosts the largest public health forums on Black Health in the nation. This panel is sponsored by Travere Therapeutics. The “Men’s Health: Rare Kidney Disease Across Generations” panel includes three Black men, from the NephCure community, from a range of ages and in different stages of their focal segmental glomerulosclerosis (FSGS) journey; four time Grammy-award winning producer, songwriter, and social entrepreneur, Brian Kennedy, NephCure Board member and Kappa Alpha Psi fraternity member, Kevin Mott, and advocate and Georgia State University student, Joshua Albright. FSGS is a rare and progressive kidney disease that affects Black Americans at rates 4-5 times higher than white Americans. A mutation on the APOL1 gene, found in people of African descent, is associated with one of the most severe forms of FSGS. “These three NephCure advocates bring an essential voice and awareness to the Black community, especially amongst Black men. There is often a stigma when it comes to discussing men’s health issues. Brian, Kevin, and Joshua each have unique experiences that will shed light on and start a very important dialogue,” Lauren Eva, NephCure’s Vice President of Professional Relations, said. Each panelist will share their unique story with FSGS and discuss their experience pursuing an accurate diagnosis, navigating treatment options, and their mental health. Kennedy, Mott, and Albright will also ignite the critical conversation around race-related concerns, the genetic link that increases Black Americans’ risk for kidney disease, and the important early warning signs of kidney disease that everyone, no matter their age or health, should be aware of. The Black Health Matters Summit and Health Fair builds upon the collective strengths and shared goals of people and organizations seeking to disrupt the current medical establishment through preventative and intentional action that improves the quality of Black life. NephCure is proud to partner with Black Health Matters and Travere Therapeutics and raise awareness about rare, protein-spilling kidney diseases. The Black Health Matters Summit and Health Fair is both an in-person and hybrid event held on Saturday, August 6th. To learn more and to register for the event, please visit https://blackhealthmatters.com. About NephCure Kidney International NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. 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 more than 40 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. About Black Health Matters Black Health Matters (BHM) was launched a decade ago, and is the leading health, wellness and chronic disease interactive digital platform dedicated to improving health outcomes among African Americans. BHM has collaborated with a wide range of partners, including fraternities, sororities, and faith-based and civic organizations to raise awareness around chronic diseases, mental and physical health, and fitness in the Black community. The organization’s mission is to improve health literacy, which includes addressing health care, health policy, health equity, and health disparities for positive outcomes. For more information go to www.blackhealthmatters.com ###
Cure for Cole Wiffle Ball Tournament June 1, 2022 by Kylie Karley Leave a Comment Join us on Saturday, August 13th for this year’s Cure for Cole Wiffle Ball Tournament! Sign up today to join the fun of this fantastic fundraising event. Game play starts at 8:30 a.m. at Central Field in Scituate, Massachusetts. Please purchase your tickets in advance. All proceeds support NephCure’s mission of fighting for better treatments and a cure for Nephrotic Syndrome, FSGS, and other rare, protein-spilling kidney diseases.
Countdown to a Cure Boston May 27, 2022 by Kylie Karley Leave a Comment Join us on Friday, October 14, 2022 for the 3rd annual Countdown to a Cure Boston — an incredible night of dinner, drinks, silent and live auctions, connecting with patients and other community members, and networking with New England’s leading professionals. All proceeds support NephCure’s mission of fighting for better treatments and a cure for Nephrotic Syndrome, FSGS, and other rare, protein-spilling kidney diseases.
Countdown to a Cure NYC May 11, 2022 by Kylie Karley Leave a Comment Join us on Thursday, November 10, 2022 for the 18th annual Countdown to a Cure NYC — an incredible night of dinner, drinks, silent and live auctions, connecting with patients and other community members, and networking with hundreds of New York’s leading professionals. All proceeds support NephCure’s mission of fighting for better treatments and a cure for Nephrotic Syndrome, FSGS, and other rare, protein-spilling kidney diseases.
NephCure Welcomes New Life Church NephCure Welcomes New Life Church NephCure offers resources for learning how to keep your kidneys healthy and support for those suffering from chronic kidney disease and kidney failure. Our kidneys are responsible for filtering blood, balancing fluids, and meeting so many needs that we rarely think of. NephCure offers guidance on how to protect these vital organs, like eating a kidney-friendly diet, looking for the warning signs of kidney issues, and knowing which questions to ask your doctor to stay on top of your kidney health. For those suffering from Chronic Kidney Disease (CKD) or who are on dialysis due to kidney failure, NephCure can assist with finding a specialist, clinical trials, and treatment options. Support for the Supporters FSGS is a rare kidney disease, and people of African descent are 5 times more likely to get FSGS compared to the general population. NephCure is dedicated to helping those who are affected by rare kidney disease, like Sachet and her family. After her son was diagnosed in 2017, Sachet quickly found NephCure and has come to us for support and community ever since. Meet Sachet Understanding The Warning Signs of Kidney Disease How do you really know if your kidneys are healthy? Find out here. Learn More Does Kidney Disease Run in Your Family? Find out if you’re at risk for kidney disease — and what to do if you are. Learn More Talk to Your Doctor About Your Kidney Health Learn the signs and symptoms of kidney disease. Learn More Cultural Conversation: Rare Kidney Disease DEFINED Listen as kidney disease patients, clinical experts, and activists discuss the ins and outs of kidney disease in communities of color. Watch Webinar The Many Faces of Kidney Disease Quin Taylor “I knew plenty about kidney disease because my dad was a dialysis patient, but it was very different becoming the patient myself.” Read Quin’s Story Patrick Gee “I have been on the receiving end of racial and social microaggressions such as ‘You don’t look as sick as all of my other Black patients.‘” Read Patrick’s Story Kevin Mott “For me, it was just doing whatever I could to take care of myself. Just trying to strike that balance between being responsible about my health and making sure that I’m enjoying life.” Read Kevin’s Story Fallon Bell “My diagnosis has allowed my family to have more open communication about not only my diagnosis, but theirs as well, and we’ve been able to learn from one another and make better decisions about our healthcare.” Read Fallon’s Story NephCure is grateful to HEAL Collaborative for their joint work on the Health Equity Initiative.