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NephCure Specialist of the Month: Dr. George Vasquez Rios

We are incredibly proud to highlight Dr. George Vasquez Rios as our NephCure Specialist of the Month for March. This initiative recognizes the outstanding contributions of NephCure Specialists to the field of nephrology and spotlights their work, projects, accomplishments, and valuable advice for the rare kidney disease (RKD) patient community. In addition to his clinical and research contributions, Dr. Vasquez Rios serves as Co-Chair of the Evidence Generation Working Group for NephCure’s IgAN Alliance.

Dr. George Vasquez Rios is a nephrologist specializing in glomerular and rare kidney diseases.  He serves as Director of the Glomerular and Genetic Disease Center at Renal Medicine Associates in New Mexico, where he leads clinical care, investigator-initiated studies, and clinical trials focused on rare and complex kidney disorders.  His work centers on improving diagnosis, advancing translational research, and implementing novel therapies for patients with glomerular diseases.

Dr. Vasquez Rios is also the founder of the BRIDGE-GN (Building Research and Innovation to Drive Glomerular Equity in Glomerular Diseases) research consortium; an initiative dedicated to integrating real-world data and multi-omic analyses to improve treatment approaches and outcomes, particularly for patients with IgA nephropathy and FSGS. 

In honor of Kidney Month, NephCure connected with Dr. Vasquez Rios to discuss his perspectives on the rare kidney disease community and the work being done to support patients and families.

We asked Dr. Vasquez Rios what he wishes more people knew about rare kidney diseases. Here’s what he shared:

“Rare kidney diseases are more common than most people realize and often affect patients during the most productive years of life. It is also important to recognize that many of these conditions may go unrecognized for several years until patients begin to develop more evident signs or symptoms. Many of these diseases are serious but treatable when diagnosed early and managed by specialists. Increasing awareness helps patients reach the right care sooner and ultimately improves long-term outcomes.”

We asked Dr. Vasquez-Rios about the common misconceptions surrounding rare kidney diseases that he frequently encounters in his clinic. Here’s what he shared:

“One common misconception is that rare kidney diseases are untreatable or inevitably lead to kidney failure. Actually, advances in genetics, immunology, and targeted therapies are transforming how we diagnose and manage these conditions. Most importantly, we are living in a unique time in nephrology and medical research, where the discovery of new compounds and their translation into therapies is accelerating faster than ever before. Thus, the possibility of a “cure” for several of these conditions is no longer just a distant dream. At the same time, advances in medical management have significantly improved outcomes, allowing many patients to achieve better disease control, improved quality of life, and greater hope.”

Rare kidney diseases often receive less attention and fewer resources. We asked Dr. Vasquez Rios how organizations like NephCure are helping change the landscape for patients and families affected by these conditions. He shared:

“Organizations like NephCure play a critical role in connecting patients with expert care, supporting research, and accelerating the development of new treatments. First, creating a “hub” where physicians, researchers, patients, and other stakeholders can collaborate to address the complexities of rare kidney diseases is essential. Second, supporting local initiatives and strengthening professional networks helps to foster meaningful collaborations. Third, promoting patient advocacy and ensuring that the patient’s voice is represented is fundamental, as the most impactful initiatives emerge when diverse groups align around a shared – higher – purpose. Together, these united efforts can significantly transform the lives of patients living with rare kidney diseases.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

NephCure Expands Its National Network of Rare Kidney Disease Specialists

The growing NephCure Specialists program connects more patients and families to expert care for rare kidney diseases.

PHILADELPHIA, PA. (February 12, 2026) — NephCure, the leading nonprofit organization dedicated to creating equitable health access and improving outcomes for people living with rare, protein-spilling kidney diseases, announced the addition of a new cohort of 35 new NephCure Specialists, bringing the total number of specialists in their network to 207.

About the NephCure Specialist Program 

The NephCure Specialist program connects patients and caregivers with nephrologists who have deep expertise in focal segmental glomerulosclerosis (FSGS), IgA nephropathy (IgAN), membranous nephropathy(MN), and other rare kidney diseases (RKD). Specialists in the program demonstrate a commitment to patient-centered care, research, education, and collaboration with the rare kidney disease community.

“The NephCure Specialist Program has connected me with a wonderful community of people working to improve the lives of people living with glomerular disease. It has also been inspiring and intellectually stimulating for me to be a part of NephCure’s scientific and academic efforts,” Dr. Myda Khalid, NephCure Specialist and Associate Professor at Indiana University-School of Medicine said.

This group of carefully vetted physicians are not only leaders in clinical care, but also active champions of research, education, and advocacy within the kidney disease community. Their expertise helps ensure that patients receive accurate diagnoses, access to cutting-edge treatments, and the guidance needed to navigate complex and often life-altering conditions.

Through this program, NephCure aims to reduce diagnostic delays, expand awareness of clinical trial opportunities, and strengthen the connection between research advancements and real-world patient care.

Welcoming the 2025 NephCure Specialists

The 35 newly recognized NephCure Specialists represent a diverse group of adult and pediatric nephrologists across academic medical centers and community-based practices. Together, they bring expertise spanning clinical care, translational research, and leadership in glomerular disease programs.

Newly Recognized NephCure Specialists in 2025

To read more about each physician, and to find a NephCure Specialist near you, click here.  Are you a healthcare provider interested in becoming a NephCure Specialist or collaborating with the program? Click here to learn more and to nominate yourself or a colleague.

Thank You to Our Sponsors

NephCure gratefully acknowledges the generous support of our 2025 sponsors: Calliditas Therapeutics, Travere Therapeutics, ANI Pharmaceuticals, Alexion, Mallinckrodt Pharmaceuticals. We are thankful for their continued partnership and commitment to advancing research, education, and innovation in the rare kidney disease space. 

About NephCure

NephCure’s mission is to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. 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.

Finding Strength, One Brick at a Time: Amanda Skeens’ Transplant Journey

For New Jersey native Amanda Skeens, life has always been about connection to her family, her passions, and her resilience. Whether cheering on her beloved New York Rangers or spending hours building elaborate LEGO sets, Amanda knows how to find joy in the small things.

Her joy was tested in 2007, when she was diagnosed with IgA nephropathy, a rare kidney disease (RKD) discovered through a routine physical from her urinalysis. 

“I never had any visible or physical symptoms of anything being wrong,” Skeens stated. “Suddenly, my being adopted had me thinking that I have no medical history to look back on.”

For years, Amanda managed her disease with limited treatment options. In 2018, stress from work triggered a dangerous kidney flare-up that caused her protein levels to spike dramatically. When her doctor advised that she begin transplant evaluation, it was a difficult reality to face.

“I knew I would get to this point eventually,” she said. “But I was declining so rapidly that it was hard to process this whole new world.”

Determined to take charge of her care, Amanda switched nephrologists and found the support she needed. “My new nephrologist was fabulous from day one,” she said. “He told me he would help delay my transplant, and he did, for almost five years.”

In December 2024, Amanda received the call she had been preparing for — she was ready for a kidney transplant. Her donor would be her cousin, Joe, who had selflessly volunteered to be tested.

Today, nearly one-year post-transplant, Amanda and Joe are both thriving. “He jokes that he’s doing everything he normally would with ‘only one kidney,’” she said. “But I will forever be indebted to him for this generous gift of a second chance at life.”

As she recovered, Amanda leaned on her favorite hobby, which was building LEGO sets to keep her mind and spirit strong. She bought a massive set with more than 3,000 pieces to work on after surgery.

“I use LEGO as a fun way to relax and decompress,” said Amanda. “While doing LEGO, I listen to music, and I am super focused on building and checking out of the world for hours on end. LEGO has been a great escape for my mental health because this is what I find to be a fun and light-hearted activity to do.”

Amanda’s journey has taught her the power of self-advocacy and mental resilience.

“Looking back, I feel like my diagnosis did change the way I looked at my life, because I never let this determine who I am as a person,” she said. “My biggest advice for other RKD patients is that you must be your own advocate and arm yourself with the knowledge that is available to all of us and bring it forward to your nephrologist.”

To read more stories, just like Amanda’s, click here or to help continue to raise awareness about rare kidney disease, share your story with NephCure here.

NephCure Specialist of the Month: October 2025: Dr. Arvind Madan

We are proud to shine a spotlight on Dr. Arvind Madan, our NephCure Specialist of the Month for October. This recognition honors the exceptional contributions of NephCure Specialists to the field of nephrology, highlighting their impactful work, innovative projects, and dedication to supporting the rare kidney disease (RKD) community.

Dr. Arvind Madan is a board-certified nephrologist and is a partner physician and executive board member (vice president) at Central Florida Kidney Specialists (CFLKS) in Orlando, FL.  He is the founder and president of NCCF.R (research division of CFLKS) where he is the principal investigator in numerous clinical trials.  He is also the president of the Florida Society of Nephrology.

He is an assistant professor of internal medicine at the University of Central Florida (UCF) College of Medicine and assistant professor at the Orlando College of Osteopathic Medicine. He’s the Director of multiple DaVita Dialysis Units. Dr. Madan is also an attending nephrologist in the residency program at Orlando Regional Hospital System. He received his medical degree from Maulana Azad Medical College in New Delhi, India. He completed his residency in internal medicine at Nassau County Medical Center in East Meadow, NY. He then completed his fellowship in nephrology at the State University of New York (SUNY) Health Science Center (HSC) in Syracuse, NY.

In addition to his academic and clinical work supporting patients, Dr. Madan has collaborated closely with NephCure to expand access to treatment for individuals living with rare kidney diseases. Recently, NephCure had the opportunity to sit down with Dr. Madan to discuss FSGS and advances in rare kidney disease care. When asked what he finds most rewarding about working with this community, Dr. Madan shared 

“The patients with RKD are scared, confused and looking for someone with experience in their disease to help guide them through this lifelong journey with the best possible outcome.  Due to the very fact it is “rare”, not all nephrologists treat RKD.  Nephrology has evolved tremendously and in particular RKD.  This requires staying up to date on the latest research and developments in the understanding of the pathophysiology and the latest therapies to appropriately manage RKD.”

We understand how overwhelming and stressful it can feel to receive a rare kidney disease diagnosis. When we asked Dr. Madan what guidance he would offer to someone newly diagnosed with FSGS, he shared words of support and advice: 

“There is a wide variety of possible causes of FSGS.  It’s a pattern of injury that you see under the microscope. Therefore, finding a cause through further investigation (i.e., eliminating secondary origins, genetic testing) and appropriate treatment is the start.  While it is one of the more difficult GN’s to treat, the treatment landscape is constantly evolving and while various therapeutic agents are currently available, many ongoing clinical trials offer viable therapeutic options.   Since our practice participates in many of these clinical trials, our patients have the opportunity to consider participation locally.  I tell patients that while an FSGS diagnosis can feel overwhelming and stressful, we have many more options today than we did in the past and educating themselves on their disease through social media groups and patient advocacy groups, like NephCure, can help patients feel more empowered.”

Having a connection to a supportive community is vital for patients with rare kidney diseases, allowing them to connect with others who truly understand their experiences. We asked Dr. Madan about the role patient advocacy organizations like NephCure play in bridging the gap between patients, caregivers, and specialists, and he shared: 

“When patients receive a diagnosis, most will search online for more information, so we need organizations like NephCure to help guide patients and caregivers to the appropriate specialists in a timely manner, refer them to active research sites like ours, provide information on their disease and help connect them with others in similar situations.”

Dr. Madan’s dedication to research, patient care, and community support truly makes a difference in the lives of those affected by rare kidney diseases. As our NephCure Specialist of the Month for October, he exemplifies the power of expertise, compassion, and collaboration in helping patients navigate their journey with hope and confidence.

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

NephCure Specialist of the Month August 2025: Dr. Dana Rizk

We are proud to shine a spotlight on Dr. Dana Rizk, our NephCure Specialist of the Month for August. This recognition honors the exceptional contributions of NephCure Specialists to the field of nephrology, highlighting their impactful work, innovative projects, and dedication to supporting the rare kidney disease (RKD) community.

Dr. Rizk is a board-certified adult nephrologist and Professor of Medicine in the Division of Nephrology at the University of Alabama at Birmingham. She earned her medical degree from the American University of Beirut, followed by her residency and fellowship at Emory University Hospital.

Her clinical and research expertise focuses on glomerular diseases, with a special emphasis on IgA nephropathy (IgAN). Dr. Rizk has served as a principal investigator for numerous clinical trials and is deeply involved in multidisciplinary research aimed at advancing understanding and treatment of IgAN. Since 2015, she has led the Division of Nephrology’s Clinical Trials Research program, and since 2019, she has also served as Medical Director for the Clinical Trials Administrative Office.

Beyond her academic and research accomplishments, Dr. Rizk works closely with NephCure to help identify barriers to timely diagnosis and effective treatment for patients living with IgAN. Her commitment ensures that patient voices are heard and that care continues to move toward better, more accessible solutions.

To help patients better understand this rare condition, we asked Dr. Rizk to explain what IgA nephropathy is and how it affects the kidneys. Here’s how she described it: 

“IgAN is a rare kidney disease characterized by the accumulation of IgA in the glomeruli (the filtering units of the kidneys) that ultimately results in inflammation and scarring leading to loss of kidney function over time. It is an autoimmune disease that requires multiple steps or “hits” to develop. The first step is an increase in immunoglobulin A protein (IgA) lacking specific sugars (galactose) also known as Galactose-deficient IgA. This is then recognized by antibodies that bind to galactose deficient IgA and lead to the formation of circulating immune complexes. These immune complexes ultimately deposit in the kidneys where they trigger a cascade of events resulting in inflammation, fibrosis and ultimately loss of kidney function in a subset of patients.”

We know that conversations about treatment, especially for rare kidney diseases can sometimes feel overwhelming. To help, we asked Dr. Rizk to share her advice for patients on how to approach these discussions with their physicians, including conversations about clinical trial opportunities. Here’s what she had to say: 

“Patients should come to their visits prepared to discuss treatment options. Any time they are considering a treatment they should evaluate with their doctor how will this treatment affects the disease and ultimately protects their kidneys. Additionally they should get familiar with common side effects they might experience while taking the treatment. When I talk to my patients about treatment options I mention to them clinical trial opportunities and remind them that participation in clinical trials is an option to consider to have access to new and exciting therapies that are being evaluated.”

Being diagnosed with a rare kidney disease can bring many questions—and often, uncertainty—about how the condition might progress over time. We asked Dr. Rizk, a glomerular disease specialist, how she helps her patients cope with and navigate this uncertainty. Here’s what she shared: 

“I discuss with patients that at the time of diagnosis we know of certain clinical, laboratory and pathologic findings that are risk factors for their disease progression. Some of these risks are however modifiable and with treatment we could change the course of their kidney disease. Besides medications, lifestyle changes are also important and contribute to their overall health. To monitor their progress we will be checking periodically labs including kidney function tests, urinalyses and urine protein levels. Patients need to keep in mind that all labs have inherent variability so we often focus on lab trends over time to make therapeutic decisions.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

NephCure Hosts First-Ever Teen Takeover Weekend to Empower Youth Living with Rare Kidney Disease

This weekend-long event was designed as a space for teenagers, and their families, navigating RKD to connect, build confidence, and prepare for the transition from pediatric to adult care.

Through engaging discussions, mentorship from young adults with lived experience, support from nephrologists, and dedicated time for both teens and their parents, the program helped bridge the gap between medical transition and emotional readiness.

A New Kind of Experience

Teen Takeover Weekend stands apart from traditional educational offerings. Instead of lecture-style programming, it offered teens and their caregivers a series of connection-driven, age-appropriate sessions that tackled everything from medication management to identity and independence.

Participants explored hard questions and real-life challenges through hands-on activities, peer-led discussions, and a shared focus on community. Sessions like “Unfiltered: Real Talk on Living Your Best Life with RKD,”“Your Next Big Move,” and “Flip, Flop & Pop” created opportunities for reflection, vulnerability, and honest dialogue not just between teens, but between families as well.

With support from Dr. Sreedhar Mandayam, an adult nephrologist and NephCure Specialist and two exceptional young adult patient mentors, Sean Converse (who has IgA nephropathy) and Keyaira Sanders (who has minimal change disease), attendees were given rare insight into what adulthood with RKD can look like and how to get there with support and strength.

A Space to Be Seen and Heard

Eleven teens, aged 15–19, and their caregivers participated in the pilot program, all of whom are affected by rare, protein-spilling kidney diseases including, FSGS, minimal change disease, IgA nephropathy, and membranous nephropathy.

The weekend opened with a welcome dinner and professional photo session to encourage early bonding. On Saturday, programming split into tailored teen and parent tracks, allowing each group to reflect on their individual journeys while building a deeper shared understanding. Creative projects like tie-dye shirts and vision boards added color to deep conversations around transition and responsibility.

Favorite sessions among families were the “Yours, Mine, or Ours?” activity and the “Flip, Flop & Pop,” event where families revealed their responses and popped balloons to spark new conversations about shared care and independence.

Reflections from the Weekend

The event’s emotional impact was echoed in post-session chats, group messages, and feedback collected throughout the weekend:

  • “This weekend filled my cup. So grateful.”
  • “My soul needed this.”
  • “She didn’t realize how much she needed to form these connections.”
  • “I feel so grateful for the information I received but I am most grateful that Ace made real connections.”

Parents expressed appreciation for the space to connect with one another and learn directly from young adults who had already walked the path their children are on. Teens found relief in not having to explain themselves, they were simply understood.

Teen Takeover Weekend showed just how meaningful it is to give teens and their families a space that’s built specifically for them. From shared stories to honest conversations, the weekend created a sense of connection and understanding that many didn’t realize they needed.

As one parent put it, “Soul cup is full. We are not alone.”

To learn more about upcoming events and future opportunities to get involved, click here or contact info@nephcure.org.

About NephCure:

NephCure’s mission is to empower people with rare, protein-spilling kidney diseases to take charge of their health while leading the revolution in research, new treatments, and care. Since 2000, NephCure has invested more than $40 million in kidney disease research and helped transform the treatment landscape through advocacy, education, and support. NephCure is a U.S. tax-exempt 501(c)(3) public charity.

 

NephCure Specialist of the Month July 2025: Dr. Guillermo Hidalgo

We are incredibly proud to highlight Dr. Guillermo Hidalgo, our NephCure Specialist of the Month for July. This initiative recognizes the outstanding contributions of NephCure Specialists to the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Dr. Guillermo Hidalgo is a board-certified pediatric nephrologist at Hackensack University Medical Center and serves as the Division Chief of Pediatric Nephrology at K. Hovnanian Children’s Hospital in New Jersey. He earned his medical degree from the University of Salvador and completed both his residency and fellowship in pediatric nephrology at SUNY Downstate Medical Center.

Dr. Hidalgo’s clinical expertise includes congenital kidney anomalies, pediatric hypertension, chronic kidney disease (CKD), acute kidney injury, dialysis, and kidney transplantation. His research interests focus on the impact of socioeconomic factors on CKD progression, environmental nephrotoxicity, nephrotic syndrome, and glomerulonephritis.

Dr. Hidalgo has been an active participant in NephCure’s Rare Kidneys on the Hill Day and a dedicated supporter of NephCure’s broader advocacy initiatives. In anticipation of this year’s event, taking place on July 23rd and 24th in Washington, D.C., NephCure sat down with Dr. Hidalgo to learn more about his deep commitment to patient care and advocacy.

We asked him why it’s so important for patients, specialists, and experts to engage in advocacy efforts—and here’s what he had to say:

“Being involved in advocacy efforts is first a privilege and a responsibility to give voice to millions (37 M) of patients with rare kidney diseases in the US who may not have their voices being heard. It is of highest importance.”

Participating in a Hill Day for the first time can feel intimidating, especially for those new to advocacy. To help ease those concerns, we asked Dr. Hidalgo to share his advice for patients who may feel hesitant about speaking up or engaging in legislative advocacy. Here’s what he shared: 

“Interest and engage yourselves into advocacy (by any means) towards your own needs and the needs of millions of patients suffering through the same severe hardships of rare kidney diseases.”

Lastly, we asked Dr. Hidalgo to share his insights on the New Era of Preventing End-Stage Kidney Disease Act H.R. 1518 and how it affects patients’ access to care and their ability to communicate with healthcare providers. Here’s what he had to say:

“Importantly, in the US the best way to make long lasting changes is through legislation. It is important to network and bring about high awareness of the profound impact that rare kidney diseases have in the US population. It is supremely important to invest in early diagnosis and preventive measures of rare renal disease progression towards the need for dialysis.  Rare kidney diseases leading to the need for dialysis have a profound, deleterious economic, health and mental health impact on millions of lives and families all across the land. There is around 124 billion cost of its care, massive loss of quality of life, significant loss of individual and family productive lives, and progressive aggregating numbers to the waiting list of renal transplants.”

If you would like to learn more about the New Eras of Preventing End-Stage Kidney Disease Act H.R. 1518, you can click here.

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

NephCure Specialist of the Month June 2025: Dr. Gabriel Cara Fuentes

We are incredibly proud to highlight Dr. Gabriel Cara Fuentes, our NephCure Specialist of the Month for June.  This initiative recognizes the outstanding contributions of NephCure Specialists to the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Gabriel Cara Fuentes, MD, PhD, is a pediatric nephrologist and director of the Glomerular Disease Clinic at Nationwide Children’s Hospital. He is an assistant professor of pediatrics at The Ohio State University and a principal investigator at the Kidney and Urinary Tract Center.  Dr. Cara Fuentes earned his medical degree from the University of Granada Spain and completed his pediatric residency training at Torrecardenas Hospital in Spain and at the University of Florida.  His clinical interests include glomerular diseases such as nephrotic syndrome, MCD, FSGS, IgAN as well as other proteinuric kidney diseases such as Alport syndrome. His NIH-funded research is focused on understanding the mechanisms responsible for proteinuria in children with protein-spilling kidney diseases.

NephCure sat down with Dr. Cara Fuentes to explore his passion for caring for patients with rare kidney disease.

Since FSGS Awareness Day is on June 10th, we asked Dr. Cara Fuentes why it’s so important for patients diagnosed with FSGS to connect with a glomerular disease specialist. Here’s what he shared: 

“Because FSGS is a rare condition, it is important to connect with glomerular disease specialists to ensure a prompt and accurate diagnosis to help decide on the best therapeutic and provide accurate information about outcomes, etc. For those types of FSGS in which doctors cannot identify a particular cause, also known as primary FSGS, the treatment consists of immunosuppressive therapies. These are not necessarily benign medications, so connecting with specialists in glomerular diseases is important to discuss the best potential therapies for a particular patient. This is very important given how fast the therapeutic landscape is evolving for patients with FSGS. Over the last few years, we have witnessed an increase in clinical trials testing novel targeted therapies. Thus, connecting with experts in glomerular diseases may help patients to stay tuned regarding potential clinical trials that could potentially benefit their health.” 

Feeling supported during a doctor’s visit can make a big difference. That’s why we asked Dr. Cara Fuentes how he makes sure his patients always feel cared for and heard. Here’s what he shared with us: 

“First, I think the key is to listen to our patients. Every patient experiences the disease and/or therapies and/or disease uncertainties in a particular manner, so to understand this, doctors first need to listen. Second, as a provider, I think it is important to educate patients about the disease and to be transparent with what we and we do not know, what to watch out for, what to expect or not, etc., so they need to be well informed and to advocate for themselves as well. In this regard, platforms like NephCure are critical for our patients. Third, it is important that clinicians not simply focus on “numbers” such proteinuria or kidney function, but rather see the patient as a whole, and help address other aspects such as mental health, nutritional status, etc. This is particularly important for vulnerable populations such as children. So, clinicians need to address not “only” the kidney disease but also facilitate access to nutritionists, social workers, psychologists, etc.  Fourth, in the case of children, while the patient is a child, this diagnosis will have an impact on the whole family, so it is important to be keep this in mind and to provide support as necessary/feasible.”

With so many new treatments on the horizon and exciting research underway, we asked Dr. Cara Fuentes to tell us more about the work being done at the Cara Fuentes Lab and the studies they’re currently focused on.

“In our lab, we are trying to identify molecules that make the kidney filters “leaky” and that help predict clinical outcomes and response to therapies. These are key approaches to discover novel therapies to help clinicians to individualize care as each patient has its own journey with the disease. Specifically, we are investigating how the lining of the blood vessels within the kidney may contribute to the protein leak, and we are looking for strategies to restore the integrity of the kidney filter.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

NephCure Specialist of the Month: Meet Dr. Jessica Coleman

We are incredibly proud to highlight Dr. Jessica Coleman, our NephCure Specialist of the Month for May.  This initiative recognizes the outstanding contributions of NephCure Specialists to the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Dr. Coleman is a board-certified specialist in both Nephrology and Internal Medicine. Her medical journey began at Georgia Tech, where she graduated with honors in Biochemistry and worked as a chemical engineer before pursuing her medical degree at Mercer University School of Medicine in Macon, Georgia. She went on to complete her residency and nephrology fellowship at the University of Kentucky, where she was later appointed chief fellow.

Today, Dr. Coleman practices privately in the Lowcountry region of Georgia and South Carolina, serving patients in the Beaufort, Hilton Head, and Savannah areas. She has been a keynote speaker at the American Society of Nephrology (ASN) and is a coauthor of a published article in the Journal of Cellular and Molecular Medicine.

NephCure sat down with Dr. Coleman to explore her passion for caring for patients with rare kidney disease.

When asked to explain how IgAN affects the patient’s kidneys, Dr. Coleman shared:

“I tell patients that they have an autoimmune disease where their body starts reacting to a specific antibody (something our body usually uses to “tag” foreign objects for destruction. Unfortunately, in IgA, our body reacts to this antibody and creates a bulky complex that then gets deposited in the kidney filters (the glomerulus). Once there, it starts a chain reaction of inflammation and mechanical obstruction that damages the filter and, as a result, causes irreversible kidney disease/destruction and fibrosis.”

With the rapid emergence of new clinical trials and treatment options, we asked Dr. Coleman how she keeps up with the latest advancements for her IgA nephropathy patients. She shared:

“I typically stay up to date on journals, go to as many conferences (American Society of Nephrology, National Kidney Foundation, etc) as I can as well as regional updates (for example, I’m at the Cleveland clinic right now for their Update on Nephrology) and have a  good relationship with pharmaceutical companies so that I can ensure that the appropriate treatment(s) reach the appropriate patient. I also follow social media platforms and routinely interact with other thought leaders to continue to adjust and titrate my formulary and approach”

When patients need additional personal support, Dr. Coleman often refers them to organizations such as NephCure, the IgAN Foundation, or the National Kidney Foundation. She also encourages patients to engage on social media, where they can connect with others who share the same diagnosis.

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find A Specialist webpage. 

Advancing Pediatric Kidney Disease Research: Building on the July 2023 SGLT2i Workshop

In July 2023, a landmark workshop brought together clinicians, researchers, patient advocates, and industry stakeholders to discuss the significant need for pediatric-specific studies in chronic kidney disease (CKD), with specific  focus on extrapolation of adult study data with SGLT2 inhibitors (SGLT2i) for potential application to the pediatric kidney disease population. This collaborative effort was driven by a shared understanding: while SGLT2 inhibitors have demonstrated clear benefit in adult populations with glomerular diseases, much remains unknown about their safety and efficacy in children.

As a direct result of this workshop, there has been notable momentum among pharmaceutical companies toward initiating pediatric studies involving these agents. Several sponsors are now actively working to develop clinical trial programs targeting pediatric populations, with specific attention to children living with glomerular diseases and those affected by congenital anomalies of the kidney and urinary tract (CAKUT). This forward movement marks an important step in bridging the treatment gap for pediatric patients and ensuring equitable access to potentially life-changing therapies.

Below is the summary paragraph that reflects the focus and consensus from the July 2023 workshop:

A workshop in July 2023 addressed the need for and feasibility of a randomized clinical trial testing the efficacy of SGLT2i in pediatric patients with CKD. Children with glomerular diseases are similar to adults. However, there are significant knowledge gaps in understanding the mechanism of disease progression and response to treatment in children with congenital anomalies of the kidney and urinary tract (CAKUT). There was a consensus that both groups of children need to be studied. A manuscript is in preparation summarizing the workshop proceedings.

NephCure is committed to supporting this ongoing work and continues to advocate for the inclusion of pediatric patients in all areas of rare kidney disease research and treatment development. 

NephCure Specialist of the Month: Meet Dr. Andrew Bomback

We are incredibly proud to highlight Dr. Andrew Bomback, our NephCure Specialist of the Month for April. This initiative recognizes the outstanding contributions of NephCure Specialists in the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Andrew S. Bomback, MD, MPH, is a nephrologist who specializes in glomerular diseases and resistant hypertension. He is Associate Professor of Medicine at Columbia University Medical Center. Dr. Bomback’s research interests focus on evaluating novel therapies for glomerular diseases. He currently serves as principal or co-investigator on clinical trials of new treatments for IgA nephropathy, membranous nephropathy, lupus glomerulonephritis, hereditary nephritis, C3 glomerulopathy, and focal segmental glomerulosclerosis.

NephCure sat down with Dr. Bomback to explore his background and experience in clinical trial awareness and participation with those living with rare kidney disease.

When asked about the reason why clinical trials are so important for rare kidney disease patients, Dr. Bomback shared:

“Clinical trials offer two important benefits for patients with glomerular diseases: (1) They help us answer important scientific questions, and (2) in glomerular diseases, rare conditions for which there either is no standard of care or the current standard of care yields suboptimal outcomes, they offer patients early access to new therapies that can potentially and hopefully change the natural history of their disease. When I first meet a patient who has just been diagnosed with glomerular disease, they always ask, “What’s going to happen to me and is there a therapy that can give me the best possible outcome?” Clinical trials are designed to answer those questions.”

Regarding his advice for patients who may be interested in participating in clinical trials, Dr. Bomback suggested:

“I let them know that being in a trial is their decision, and it has potential benefits, including getting their disease into remission, and risks, one of which is possibly being in a placebo arm (fortunately, many of the newer trials are incorporating an open label extension period so that even patients randomized to placebo eventually get the study drug). I also let them know that being in a trial requires more time and commitment than just being followed in a clinic. There are more visits to the site, and these visits are longer and more detailed. But there is a benefit to these increased “touches” with their provider. More eyes are on them, and more chances exist for us to know how they are faring.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area, visit NephCure’s Find a Specialist webpage!

NephCure Specialist of the Month: Meet Dr. Daryl Crenshaw

We are incredibly proud to highlight Dr. Daryl Crenshaw, our NephCure Specialist of the Month for March. This initiative recognizes the outstanding contributions of NephCure Specialists in the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

A proud native of Selma, Alabama, Dr. Crenshaw is a board-certified specialist in Internal Medicine and Nephrology. His journey began at Tulane University School of Medicine, followed by an Internal Medicine residency at The University of Alabama School of Medicine (UAB). During his residency, Dr. Crenshaw demonstrated exemplary leadership as Chief Medical Resident and earned the esteemed Tinsley Harrison M.D. Resident of the Year Award.

NephCure sat down with Dr. Crenshaw to explore his passion for caring for patients with rare kidney disease and address the health disparities within Black and African American communities.

When asked about the percentage of patients with African descent and their unique patient journeys, Dr. Crenshaw shared:

“Approximately 50% of my patients are of African descent. Many share unique challenges, including financial difficulties, particularly for men who face the prospect of starting dialysis and having to stop working. Additionally, mental health struggles are prevalent, with some patients expressing feelings of depression, anxiety, and even suicidal thoughts. They also face barriers to accessing quality food, which complicates their health management, despite many remaining highly compliant with their medications and dietary restrictions. These experiences highlight the need for a more holistic approach to care that addresses both the medical and socioeconomic aspects of their journey.”

Regarding awareness and access for African American patients, Dr. Crenshaw emphasized:

“I wish my African American patients had greater awareness of the importance of preemptive genetic testing, such as APOL1, to help identify their risk for kidney disease early. Additionally, better access to quality, nutritious foods to avoid the impacts of food deserts, along with improved mental health counseling, would greatly enhance overall health outcomes. Addressing these areas could significantly reduce the disproportionate burden of chronic diseases in the African American community.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area, visit NephCure’s Find A Specialist webpage!