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.
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 ###
NephCure Celebrates Largest Advocacy Event To Date July 20, 2022 by Delaney Geraghty UPDATE (July 22, 2022): NephCure is proud to share the successful results of the first annual Rare Kidneys on the Hill Day, made possible by our dedicated, powerful community of rare kidney disease patients and families. These successes include: 127 Congressional meetings attended 62 Senate meetings 65 House of Representatives meetings 136 advocate attendees 32 states and Washington, D.C. represented 2 additional co-sponsors secured for the New Era of Preventing End-Stage Kidney Disease Act WASHINGTON, D.C. (July 20, 2022) – NephCure Kidney International (NephCure) and the rare kidney disease community celebrate the success of Tuesday’s Rare Kidneys on the Hill Day. Rare Kidneys on the Hill Day, which takes place during NephCure’s Rare Kidney Disease Week, serves as the premier advocacy event for the rare kidney disease community. Tuesday’s event brought together more than 100 rare kidney disease advocates from 30 states. Together, these advocates participated in more than 121 Congressional meetings where they shared their lived experiences with members of Congress and their staff while stressing the critical need to support H.R. 7506, the New Era of Preventing End-Stage Kidney Disease Act. The bill was introduced in the House of Representatives on April 14, 2022, by Reps. G.K. Butterfield (D-NC) and Gus Bilirakis (R-FL). As a result of their dedication and efforts, rare kidney disease advocates were able to secure additional and vital co-sponsors for H.R. 7506. NephCure is ecstatic to now count Rep. Susan Wild (D-PA) as a co-sponsor of H.R. 7506 and a new champion for the rare kidney disease community. NephCure looks forward to following up with other members of Congress over the coming weeks to secure their support for this vital piece of legislation. “The New Era of Preventing End-Stage Kidney Disease Act is a critical and much-needed piece of legislation built by and for the rare kidney disease community,” said Joshua Tarnoff, NephCure CEO. “Our advocates took part in an intensive advocacy training program and took time to understand H.R. 7506. I am proud of the work they’ve accomplished to advocate for the rare kidney disease community.” Rare kidney diseases contribute to the more than $84 billion spent on treating Medicare beneficiaries with chronic kidney disease and the $36 billion spent on treating people with end-stage kidney disease (ESKD). However, there has been little to no innovation in treatment for kidney disease patients since the 1960s, when dialysis and immunosuppressants became commonly used. There are no FDA-approved treatments for rare kidney diseases, and many patients struggle to find a nephrologist who is well-versed in their conditions and can provide an accurate diagnosis and expert treatment. The New Era of Preventing End-Stage Kidney Disease Act would help transform care delivery to rare kidney disease patients by increasing community and healthcare provider awareness and education, addressing kidney health disparities in communities of color, and advancing rare kidney disease research. NephCure thanks Travere Therapeutics, Novartis, Boehringer Ingelheim Pharmaceuticals, Chinook Therapeutics, and Calliditas Therapeutics for their support, which allowed NephCure to bring together and empower the largest virtual gathering of rare kidney disease advocates ever. For more information on H.R. 7506 and NephCure’s advocacy efforts, please visit NephCure.org/NewEraAct. 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. ###
Delivering Cures in a Decade: NephCure Partners with PNRC to Provide Grant Opportunities for Pediatric Glomerular Disease Research July 13, 2022 by Kylie Karley KING OF PRUSSIA, PA (July 13, 2022) – NephCure Kidney International (NephCure), a nonprofit focused on finding better treatments for patients suffering from rare, protein-spilling kidney diseases, is proud to collaborate with the Pediatric Nephrology Renal Consortium (PNRC) to provide the Pediatric Glomerular Disease Accelerator Grant Program: Delivering Cures in a Decade. The Delivering Cures in a Decade grant program will provide small and medium-sized grants to nephrologists and researchers studying pediatric glomerular diseases, beginning this year, and running through 2024. This program aims to fund and accelerate research that will provide insights and evidence to help cure pediatric glomerular disorders. “The Pediatric Glomerular Disease Accelerator Grant Program is so exciting for our research community! Investigators in pediatric glomerular disorders are not short of innovative ideas and novel approaches to mechanisms of disease and potential therapeutics,” said John D. Mahan, MD, the PNRC Board President. “The gap that this grant program can really address is the current lack of critical seed funding to take these ideas from ‘concepts’ to ‘explored’, and as such lead to new treatments and cure. We could not be more excited or more committed to this work.” The NephCure and PNRC collaboration came from a mutual desire to promote and support areas of bench, translational, and clinical research in pediatric glomerular disease. “We are very hopeful that the NephCure and PNRC Delivering Cures in a Decade grant will provide invaluable insights and lead to changes of how we care for children affected by rare, protein-spilling kidney diseases,” Josh Tarnoff, NephCure CEO, said. This international grant program is open to any pediatric nephrologist or pediatric nephrology scientist. Applicants do not have to be a member of the PNRC to apply. The total award funds vary, from $10,000-$20,000 small awards to $50,000-$75,000 medium awards. Both NephCure and PNRC will review grant applications, and awardees will be announced in the fall at the PNRC members meetings. To learn more about the Delivering Cures in a Decade grant program application guidelines, eligibility, deadlines, and review process, visit https://pnrconsortium.org/nki-program/home. 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. ###
Everything You Need to Know About TRACTION-2: Clinical Opportunity for FSGS and MCD Patients June 23, 2022 by Kylie Karley Goldfinch Bio is a biotechnology company based in Cambridge, MA which focuses on delivering disease-modifying precision medicines that bring hope and renewed quality of life to people living with kidney diseases. We recently spoke with Goldfinch Bio’s Chief Medical Officer, Ed Tucker, MD, who explains more about their Phase 2 clinical research trial for GFB-887, TRACTION-2, which is currently enrolling patients. Goldfinch Bio’s Chief Medical Officer, Ed Tucker, MD What patients are you hoping to enroll for this trial? In the TRACTION-2 study that is currently enrolling, we are looking for patients with focal segmental glomerulosclerosis (FSGS) and treatment resistant minimal change disease (TR-MCD) who are between the ages of 18 and 75 years old, have a UPCR greater than or equal to 1.0 g/g, and an eGFR greater than or equal to 30 mL/min/1.73 m2. Other inclusion and exclusion criteria will apply; please consult your healthcare provider for additional details. Why is FSGS and TR-MCD your target population? In the United States, there are currently no approved therapies for FSGS or MCD. Our treatment, GFB-887, was designed specifically for diseases like FSGS and TR-MCD because it targets and protects the podocytes that are damaged and lost in the disease development and progression. Other diseases involving podocyte injury/loss may be examined in the future as well. If someone enrolled in your Phase 2 study, what is the time commitment? After a patient has been evaluated (for up to 6 weeks) for eligibility in the study they will begin to receive the treatment and will continue for up to a total of 17 visits over approximately 26 weeks. Some of these visits are done via a phone call. After completion of the full study, patients will have the option to enroll in another “extension” study where they will continue to receive treatment for up to three years. An extension study is where all patients receive GFB-887 and allows for doctors to observe the effects of the therapy over a longer period of time. How many trial sites are there available? Where are these sites located? Currently, there are 76 locations throughout the United States where patients may participate in the study. Locations of these sites may be found here. What type of treatment is GFB-887? And what makes this treatment different from other ones being tested in clinical trials? GFB-887 is a tablet and is taken by mouth with water once a day. It differs from other medications in that it was created specifically to target and protect podocytes in the kidney to prevent damage and loss. No other therapies being tested for FSGS and TR-MCD work the same way that GFB-887 does on the kidneys. How is precision medicine integrated in this clinical trial? As this is a phase 2 trial, we are looking at different markers (including testing for genetic) for response to GFB-887, both before and after treatment has begun. Hopefully, we will be able to better integrate these findings into future studies and potentially improve outcomes for patients. Is there flexibility where lab samples can be collected for the participant? Is there an option for home care visits to collect these samples? Yes, patients have the flexibility to schedule follow-up visits within a few days before and after the expected date. Furthermore, if conditions outside the control of the patient change (Covid for example), or if the patient is unable to travel due to health limitations, the study site will work with the patient on scheduling and potentially offer telemedicine options for select visits. Additionally, your study site may be able to assist with travel services to and from office visits. What medicines can participants remain on while in the TRACTION-2 trial? Some medications, including calcineurin inhibiters (CNIs; cyclosporine for example), will need to be discontinued. Others, including angiotensin converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARB) should be continued, while various other drugs may be continued if on a stable dose. Please consult your healthcare provider for additional details. Does this trial have a placebo comparison? Yes. The placebo is used because comparing results in study participants who receive GFB-887 with results in participants who receive placebo is the best way to explore how well GFB-887 works and how safe it is. 66% of patients will receive GFB-887 (33% will receive placebo), but all patients will have the option to join an extension study where all patients will be offered GFB-887 for up to three years. What will happen to the results of this clinical trial? Can the participant stay on the medicine if it works? The results of this study will help guide the additional exploration of GFB-887 in these diseases and potentially others. It is one of many steps required before the FDA will approve a drug for broader availability. Currently, participants, once completing the initial study, have the option to participate in another “extension” study for up to three years. If a patient was taking placebo during the initial trial, they will receive GFB-887 in the “extension” study. Do you have plans for expanding into a pediatric trial? The current trial does not allow for patients under the age of 18, but we hope to offer additional options for younger patients in the future. Will the patients be paid for participating in the trial? Patients may be eligible to receive compensation for time and reasonable out-of-pocket expenses related to taking part in this trial. For more information, please talk to your trial doctor and trial staff. Goldfinch Bio’s TRACTION-2 clinical research trial is evaluating an investigational precision medicine, GFB-887, for the potential treatment of TRMCD and FSGS. The purpose of the trial is to determine if GFB-887 is safe and may help people who have high levels of protein in their urine due to kidney diseases caused by podocyte injury. To learn more about the TRACTION-2 clinical trial, click here. To see a full list of clinical research opportunities and find the right trial for you, visit KidneyHealthGateway.com. This article was developed in partnership with Goldfinch Bio, Inc.
NephCure Celebrates Introduction of New Era of Preventing End-Stage Kidney Disease Act April 15, 2022 by Kylie Karley KING OF PRUSSIA, Pa. (April 15, 2022) — NephCure Kidney International (NephCure) applauds Friday’s introduction of the New Era of Preventing End-Stage Kidney Disease Act (H.R. 7506) sponsored by Reps. G.K. Butterfield and Gus Bilirakis. This legislation would help transform the delivery of care to rare kidney disease patients by increasing community and healthcare provider awareness and education, addressing kidney health disparities in communities of color, and advancing rare kidney disease research. “I’m proud to introduce the New Era of Preventing End-Stage Kidney Disease Act, which is a critical step toward the transformation of kidney disease care,” said Butterfield, lead sponsor of the legislation. “For far too long, the rare kidney disease community has been overlooked, leaving many families in a chronic state of uncertainty as they navigate the many hurdles in getting diagnosed, treatment and care. There is a new era of hope on the horizon for these families.” “Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said Bilirakis. “Through increased education, 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.” Rare kidney diseases contribute to the more than $84 billion spent on treating Medicare beneficiaries with chronic kidney disease, including the $36 billion spent on treating people with end-stage kidney disease (ESKD), yet there has been little to no innovation in treatment for kidney disease patients since the 1960s when dialysis and immunosuppressants became commonplace. These treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis that can result in a rapid decline in kidney function and, ultimately, kidney failure. For many rare kidney disease patients, their only options are dialysis, transplant or death. Additionally, communities of color are disproportionately affected by rare kidney diseases and face a lack of adequate treatment options due to existing health disparities — Black Americans are 4-5 times more likely to develop ESKD than white Americans. Many rare kidney disease patients struggle to find a nephrologist well-versed in their rare conditions who can provide an accurate diagnosis and expert care. FDA-approved treatments are lacking for most rare kidney diseases, but thanks to the 21st Century Cures Act we are on the cusp of a new era of rare kidney disease treatment and care — giving hope to thousands of patients and their families. By taking action now, Congress can promote health equity, save lives, and conserve valuable healthcare resources. “We applaud the Rare Disease Caucus Co-Chairs Mr. Butterfield and Mr. Bilirakis for their leadership. For decades there have been no breakthrough treatments for individuals experiencing rare kidney disease. However, we believe we are entering a ‘New Era of Kidney Care,’ and this comprehensive legislation will help forge a new frontier for innovation to thrive,” said Josh Tarnoff, NephCure CEO. “Dialysis and transplants cannot be the only options. It is time to modernize treatments and the delivery of care to kidney patients and bring it into the 21st century.” Revolutionizing rare kidney disease treatment has been a longstanding priority for NephCure. In 2020, a core group of partners, comprised of NephCure, Travere Therapeutics and the American Association of Kidney Patients (AAKP), facilitated the first-ever Rare Kidney Disease Roundtable and the resulting white paper entitled “We Deserve Better: Revolutionizing Rare Kidney Disease,” which outlined urgent needs for rare kidney disease patients and their families and helped inform the creation of the New Era of Preventing End-Stage Kidney Disease Act. NephCure will work with Congress to advance this bill as its key legislative priority. Patients and advocates are encouraged to join the NephCure Action Network, a movement of patients, caregivers, physicians and other partners who are committed to raising their voices to help educate policymakers on what’s important to those directly impacted by rare kidney diseases. For more information about the New Era of Preventing End-Stage Kidney Disease Act, visit NephCure.org/NewEraAct. 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 30 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. exempt tax-exempt 501(c)(3) public charity. ###
NephCure Recognizes National Minority Health Month this April April 4, 2022 by Kylie Karley National Minority Health Month celebrates the inclusion of Asian and Pacific Islander, Black, Hispanic, Native American, and other communities of color in the conversation about health education and disease detection, disparities, and treatments. Chronic kidney disease (CKD) affects 1 in 7 adults in the U.S., however, for people of color, a combination of systemic racism, lack of inclusion in medical advancements, and other uncontrollable risk factors contribute to even higher CKD rates. CKD in Communities of Color If you are Black or African American, Hispanic or Latino, Asian American, Pacific Islander, American Indian, or Alaska Native, or Native Hawaiian or Other Pacific Islander, heritage you may be at an increased risk for kidney disease. Minority populations are also at higher rates of high blood pressure, diabetes, obesity and heart disease — all of these factors increase the risk for kidney disease. Did You Know? Asian Americans and Native Hawaiians are the most understudied racial group in CKD research. Black Americans represent 13% of the population, but account for 32% of CKD patients. Hispanic Americans are 1.3 times more likely to develop kidney disease, and CKD rates have risen 70% since 2000. Our Health Equity Initiative With the inequities in kidney health in mind, NephCure launched a Health Equity Initiative in 2021 to address racial disparities in rare kidney diseases. NephCure acknowledges the voices of these communities, and we are excited to continue the work of addressing health disparities for all multicultural communities by featuring culturally relevant health education and resources, partnering with community-based organizations, and advocating for diverse and just medical research.
April is National Volunteer Month April 1, 2022 by Delaney Geraghty This month, the (much-deserved) spotlight is on you: our volunteers! April is National Volunteer Month, and NephCure is dedicating it to acknowledging the important role our volunteers serve in our community throughout the year. By generously giving their time to further our mission, our volunteers truly help us save kidneys and save lives. The past two years have changed the way volunteers serve in many ways, and in some instances completely paused certain volunteer activities. It’s been a difficult time for both nonprofits and volunteers as we push through and adapt to the ever-changing challenges of the pandemic — we’re incredibly appreciative and humbled by our 263 volunteers who have stuck through the transition or who are jumping back in full force to fight for rare kidney disease patients. To our volunteers: thank you, thank you, THANK YOU! We can’t emphasize our gratitude for your dedication enough, and we love working with you! NephCure offers a variety of unique and engaging opportunities for volunteers across the globe. Our volunteers make essential contributions to our mission by: Serving as Regional and State NephCure Community Leaders Serving on NephCure’s Board of Directors Leading committees for signature NephCure fundraising events, such as our Countdown to a Cure galas, nationwide series of Pig Jigs, and more Participating in our advocacy work through the NephCure Action Network Planning community fundraisers, including local walks and golf outings Providing one-on-one support to other patients and families in need through our Patient Connections support program Sharing their stories through our Voice of Patient program Helping with social media marketing And more! In celebration of our volunteers this month, we’re excited to launch our new NephCure Service Award Program as a small token of our appreciation for our volunteers’ dedication and generosity. Volunteers will receive an annual service award pin recognizing each year of their contributions to NephCure, with special awards for 5, 10, 15, and 20 years of service. To our current volunteers: look out for service award pins coming your way! We’ll also be recognizing those who have gone above and beyond with the Dedicated Service Award, NephCure Impact Award, and Leadership Award. Stay tuned to learn more about our award recipients and the amazing work they’ve done for NephCure. Are you interested in helping NephCure save kidneys and save lives? Contact Kelly Helm at khelm@nephcure.org to learn more about volunteer opportunities.
Get To Know Your Kidneys: Understanding the Warning Signs of Kidney Disease March 29, 2022 by Delaney Geraghty Did you know that your kidneys are only about the size of your fists? These small but powerful organs carry the huge responsibility of filtering waste from our blood. With such an important function, it’s crucial to maintain your kidneys’ health — but how do you know if your kidneys are healthy? And how can you protect them from damage? Read on to learn more. What do my kidneys do and why are they important? Our kidneys perform a host of vital functions. They maintain a healthy balance of water and electrolytes, such as sodium, potassium, and magnesium. The kidneys also regulate blood pressure and help produce red blood cells. They are the only organs that filter our blood. Without them, toxins can build up in the body — this build-up can potentially turn deadly. How do I know if my kidneys are healthy? Know Your Family History: Does anyone in your family have kidney issues or renal failure? Does high blood pressure or diabetes run in your family? If you answered yes, don’t panic. Instead, be proactive and informed. Many of us have family members with these health concerns. These factors could be a clue about your own kidney health and your risk for developing kidney disease. If you are unsure of your family history, consider starting the conversation with your family about kidney health. Know Your Medical History: Have you been diagnosed with any medical conditions or diseases? Uncontrolled diabetes or high blood pressure, also known as hypertension, can lead to kidney damage. One of the most important warning signs is if your blood pressure is abnormally high despite taking medication. If this is the case, it’s time to get tested for kidney disease. Look for Signs and Symptoms: One way to monitor your kidney health is being aware of what to look for. These signs and symptoms may mask themselves as other issues that have little effect on your daily life. This is why kidney disease is sometimes called a “silent disease” and can be difficult to catch early on. Signs and symptoms include: Family History of Kidney Disease Dry, itchy skin Always feeling cold Frequent fainting or dizzy spells Prolonged swelling of the legs and feet Blood in the urine Foamy or brown-colored urine Unrelenting tiredness Trouble concentrating Puffiness around the eyes Lack of appetite and persistent nausea Talk With Your Doctor: As essential as the kidneys are, their decline can go unnoticed for months, or even years because signs and symptoms are usually not immediate. Staying up to date on your kidney health often begins with a conversation with your doctor. Ask them about kidney labs, also referred to as renal labs, and inform them of any abnormal signs and symptoms you’ve noticed. If appropriate, the doctor may run blood and urine tests that help determine your level of kidney function. I want to be proactive about my kidney health. What’s next? Take the opportunity to tackle kidney disease head on. Remember the four tips for staying on top of your kidney health: know your family history, know your medical history, look for signs and symptoms, and talk with your doctor. If you or someone you know is dealing with these warning signs, make contacting a doctor a priority, and visit NephCure.org for more information and resources.
March is National Kidney Month March 1, 2022 by Lauren Eva Raise Awareness During National Kidney Month March is all about the kidneys! To spread awareness about kidney disease and honor those who are affected by it, we welcome you to download our NephCure National Kidney Month graphics and share across your social media channels. Download our social media graphics here. #SockItToKidneyDisease on March 10th Additionally, we invite you to wear your craziest pair of socks on World Kidney Day, March 10th, to join us in the #SockItToKidneyDisease campaign. One of the first signs of kidney disease many notice is swelling — especially in the legs and feet. Sometimes the swelling is so severe that it’s hard for people to fit socks around their ankles. Post a photo online in your socks, tag @NephCure, and use the hashtag #SockItToKidneyDisease.