Recent News

Ahead of the inaugural National APOL1 Kidney Disease Awareness Day on April 30, 2024, NephCure has been making a meaningful impact in communities across the country. The organization is joining hands with Historically Black Colleges and Universities and faith– based organizations nationwide to spread awareness about APOL1 kidney disease, a genetic form of kidney disease that impacts people of African descent.  

Black Americans are 3-4 times more likely to develop kidney failure than white Americans, this is due in part to genetics. Every person inherits 2 copies of the APOL1 gene. Those who inherit a change in both copies of their APOL1 genes have 10x to 30x the risk for developing kidney disease. These gene changes are only found in people of African descent.  APOL1 researchers believe that up to 40% of Black Americans on dialysis have APOL1-related kidney disease.  

NephCure’s goal for each of these partnerships, in addition to raising awareness, is to promote early detection and prevention.

Last month, a recent collaboration took place at Howard University College of Dentistry’s health fair on March 16, 2024. This health fair showcased various healthcare organizations and offered educational sessions in the D.C. Metro Area. Attendees had the opportunity to learn about the APOL1 gene and its connection to rare kidney disease, as well as to receive NephCure’s cookbook filled with kidney-friendly recipes and other educational materials, empowering individuals with more information they will need to manage their kidney health effectively. 

On March 24, 2024, NephCure also partnered with Fountain of Praise Church in Houston, TX,  to host an APOL1 Educational Event. This event was designed to raise awareness and empower communities affected. Lauren Eva, NephCure’s Executive Vice President, delivered impactful speeches at the event, emphasizing the importance of knowledge and support in addressing the challenges associated with the APOL1 gene variant. Rhianna Sullivan, and Kimberly Figgs, and other NephCure staff members, were present as well and engaged directly with church members, providing insights into an upcoming screening event at the church scheduled for April 28th. Their empathetic and knowledgeable approach created a space where community members felt supported and understood, encouraging them to take an active role in their kidney health. 

In Philadelphia, NephCure partnered with Enon Tabernacle Church and the CARE and JUSTICE team, an APOL1 kidney disease registryand clinical trial from Duke University, on April 20, 2024 for the church’s Know Your Numbers Men’s Health Initiative. More than 600 men came out to the event, and 176 of them received kidney screenings. Patient advocate, Joshua Albright, was also in attendance to sit on several panels throughout the day, sharing his personal experience with APOL1 kidney disease. NephCure’s newest Board of Directors, Rev. Leroy Miles and Dr. Barbara Gillespie were both at the event, helping lead the event logistics and conducting urinalysis screenings respectively. NephCure’s CEO, Josh Tarnoff, as well as other staff members, Montrez Lucas, Erin Park, and Kylie Karley assisted in the screening process, handing out NephCure education materials, APOL1 Awareness Day t– shirts, and overall helping provide crucial early detection and intervention opportunities.  

Looking ahead, NephCure has planned an APOL1 awareness event at Bethel Missionary Baptist Church in Tallahassee this Saturday, April 27, 2024. NephCure has organized urinalysis screenings for the 225 expected attendees and will be distributing educational materials and APOL1 Awareness Day shirts to foster conversations, promote a sense of community, and ultimately raise awareness.  

NephCure has other upcoming APOL1 awareness events this Sunday, April 28, 2024, in Houston, Chicago, Atlanta, and Washington, D.C. These events aim to educate attendees about the connection between the APOL1 gene variant and rare kidney disease risk. Each event will offer informative sessions with leading nephrologists, free t-shirts, urinalysis screenings and provide attendees with invaluable resources to help them take control of their kidney health.

And to round out the APOL1 Kidney Disease Awareness Day events, NephCure is hosting a live, virtual town hall on the inaugural awareness day, April 30th, at 7pm ET. The event is free to attend, and all are encouraged to register here. To learn more about APOL1 and how you can get involved in APOL1 Kidney Disease Awareness Day on April 30th, please visit resources.nephcure.org/apol1. 

NephCure, a leading nonprofit organization dedicated to finding better treatment options and a cure for rare kidney disease, proudly announces the appointment of three distinguished individuals to its Board of Directors. These additions, Eve Dryer, Barbara S. Gillespie, MD, MMS, FASN, and Reverend Leroy Miles, each bring a wealth of experience and expertise that promises to drive NephCure’s mission forward.

“These three exceptional individuals bring a wealth of experience and unwavering dedication to patient advocacy and community service. They are all deeply committed to supporting those affected by rare kidney disease and we are grateful for their leadership. With their addition to our Board of Directors, our organization is primed to build upon our successes and make an even greater impact in the fight against rare kidney diseases,” NephCure’s Chief Executive Officer, Josh Tarnoff said.

Eve Dryer, an esteemed leader in rare disease patient advocacy and healthcare communications with over 25 years of experience, recently retired from her role as VP of Patient Advocacy at Travere Therapeutics. Throughout her career, she has been a driving force in advancing health literacy and improving outcomes in underserved communities. Formerly, she founded and led Vox Medica’s PR and patient advocacy practices, earning accolades such as five Silver Anvil Awards and recognition in the PharmaVOICE 100. Eve’s dedication extends to her roles on the Board of Sisters Network Inc. and as a past chair of HealthyWomen’s Board of Directors. Her legacy includes championing patient diversity and inclusion initiatives, including her role in founding the Rare Disease Diversity Coalition and Travere’s internal Rare Disease Patient Advisory Council. With impactful endeavors like Teens for Pink (focused on African American breast cancer) and her leadership at a Philadelphia-based healthcare PR agency, Eve continues to be a pivotal figure in healthcare advocacy.

Barbara S. Gillespie, MD, MMS, FASN, is a board-certified adult nephrologist who completed her internal medicine residency at the University of North Carolina (UNC) and nephrology fellowship at Duke University Medical Center. Currently serving as Vice President and Therapeutic Head of Nephrology at Fortrea (formerly Labcorp Drug Development), she supports patient centered clinical development (drugs and devices) and trials for kidney diseases. Dr. Gillespie is also an Adjunct Professor at UNC’s Division of Nephrology and Hypertension, and serves on the boards of Kidney Health Initiative (recent past) and NephroNet (current). She serves on numerous committees and advisory roles, including with the NKF and NephCure, and remains committed to advancing nephrology research to facilitate better patient care.

Reverend Leroy Miles, an accomplished Mental Health Counselor, Certified Health Coach, and Community Health Consultant, has dedicated his career to enhancing public health both in the U.S. and internationally. Through his leadership as an Associate Pastor of Pastoral Care and Counseling at Enon Tabernacle Baptist Church, in Philadelphia, PA, he oversees ministries providing vital support in mental health, HIV/AIDS, anger management, drug and alcohol recovery, surviving sexual abuse, and maternal health— including the recent launch of a doula program addressing racial disparities in Black maternal health. Additionally, Rev. Miles spearheads city-wide charitable initiatives and serves as a Covid-19 testing/vaccination site lead. Rev. Miles’ commitment to health policy improvement is further demonstrated through his board membership with the American Heart Association. A multifaceted individual, he is also a certified anger management educator, martial arts black belt, avid cyclist, and competitor in endurance events like Tough Mudder and Spartan Race.

These three individuals, Eve Dryer, Dr. Gillespie, and Rev. Miles, bring diverse yet complementary expertise and experiences to NephCure. Together, their collective passion and expertise make them a formidable team, capable of driving meaningful change in rare kidney disease healthcare, research, and patient care.

About NephCure:

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

NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare kidney disease, is proud to  announce the inaugural National APOL1 Kidney Disease Awareness Day on April 30th, 2024.The day is dedicated to raising awareness of APOL1 kidney disease,  a genetic form of kidney disease that predominantly impacts people of African descent.

APOL1 kidney disease is caused by specific genetic variations, or changes, in the APOL1 gene, which can lead to a significantly higher risk of developing kidney disease.  Individuals who inherit these gene variations have 10 to 30 times the risk of developing kidney disease, making it crucial to raise awareness and support those affected by this condition.

NephCure invites everyone to join in on the movement and help raise awareness for APOL1 kidney disease by supporting the following:

How you can help:

Share on Social Media: Spread the word by sharing your photos and posting the downloadable APOL1 kidney disease awareness graphics on social media. Remember to use the hashtag #HopeForAPOL1 and tag @NephCure.

Attend the APOL1 Day Virtual Town Hall: Join NephCure on April 30th at 7pm ET as they host an APOL1 Day Virtual Town Hall. Register for this FREE webinar where you can connect with leading APOL1 researchers, doctors, and individuals personally affected by APOL1 kidney disease.

Did you Know?

• 13% of African Americans carry APOL1 gene changes that can lead to APOL1 kidney disease.
• Of these individuals, 1 in 5 will develop APOL1 kidney disease.
• APOL1 kidney disease can impact individuals of all ages, including children and young adults, often progressing swiftly towards kidney failure.
• Unfortunately, there are currently no FDA-approved treatments specifically for APOL1 kidney disease.
• Approximately 40% of cases of kidney failure in those without diabetes are associated with APOL1 gene variations.

NephCure thanks Vertex Pharmaceuticals for their generous support in sponsoring this event and making APOL1 Kidney Disease Awareness Day possible.

For more information about APOL1 Awareness Day, please visit resources.nephcure.org/apol1

About NephCure:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

— Paul Billedo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You can watch the congressional briefing here.

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

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

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

Rare kidney disease bill poised to be reintroduced

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

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

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

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

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

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

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

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

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

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

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

About NephCure:

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

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

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

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

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

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

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