Kidney Research UKApr 28, 2025

After younger brother, George, was diagnosed with IgA nephropathy in 2023, Ed was a match and donated his kidney in February 2024.

George says: “Going to hospital became my whole life, I was there numerous times a week and my kidney function kept falling rapidly.

“It was heartbreaking seeing my test results constantly getting worse and not knowing what that meant for my future. It changed my outlook on what is important in life, and I will always be thankful for the support I received from friends and family.”

Ed says: “By the time our transplant happened, we had become very comfortable with needles and medical equipment throughout the matching process. It just felt straightforward to go and get the transplant done.

“It felt rough for a few weeks post-surgery, but the transplant has been a resounding success. George’s new kidney immediately started filtering his blood and continues to function well. He’s been able to get back to work and move forward with his life. For me, after the initial recovery from surgery, I’ve not had any problems whatsoever.”

Ed and wife, Izzy, have supported other kidney patients, by taking part in the Richmond Ultra-Marathon raising over £8,500!

Read their full story here: https://bit.ly/3EI3aWt

[Image description: 1 – Ed and George pose for a photo outside NHS Hammersmith Hospital. One wears a black top, grey tracksuit bottoms, white trainers, and has short, light hair. The other has on a grey top, black tracksuit bottoms, Nike trainers, and sports a dark beard with a mullet-style haircut. Both are carrying overnight bags. Behind them is a directions board welcoming visitors to ‘Area F’.

2 – A black and white professional photo captures Ed and George embracing and smiling at a wedding. They’re both in white shirts and black trousers. The background is softly blurred, showing wedding guests, fairy lights, foliage around a wedding arch, and the interior of a tipi tent.

3 – Another black and white professional wedding photo shows Ed and George sitting on guests' shoulders, singing along to a song. They’re the focus of the lively group shot, surrounded by guests with hands in the air. Both are wearing white shirts and black trousers, with fairy lights, foliage, and the tipi tent interior visible behind them.]

NephCureApr 28, 2025

Meet Stacey, who at the age of 5, was diagnosed with childhood nephrotic syndrome that was later diagnosed as minimal change disease in 2019.

Stacey moved shortly after her initial diagnosis as a child, and following her first or second relapse, the pediatrician referred her to a pediatric nephrologist. After extensive testing, the specialist allowed the local pediatrician to manage her relapses. In 1979, Stacey's family relocated to Texas, where their family doctor promptly referred her to Children's Medical Center in Dallas for additional testing. She continued receiving steroid treatments for her relapses. Eventually, these episodes became less frequent, occurring approximately twice a year, and ceased entirely around age 13. From ages 5 through 12, Stacey's treatment consisted exclusively of steroids.

In 1990, Stacey experienced what doctors believed was a relapse. Her mother took her to a nephrologist who performed a renal biopsy, though they don't recall the results or recommendations, and her records have since been destroyed.

Between ages 20 and 48, Stacey remained relapse-free. In 2018, she began noticing pitting edema on her shins at day's end, attributing it to normal aging, though it worsened after long flights and never fully disappeared.

Around Labor Day 2018, she developed severe pain in her side and shoulder, especially when breathing deeply. After enduring it for days with sleepless nights, she visited an urgent care clinic. X-rays and an electrocardiogram indicated possible mild pneumonia or rib injury. She received antibiotics and a Medrol pack.

Concerned about a potential kidney connection due to her mother's history of childhood nephrotic syndrome, FSGS, dialysis, and kidney transplant, Stacey consulted her doctor. Though the doctor attributed the water retention to steroids, blood tests were ordered to check kidney function before prescribing a diuretic.

Stacey continued experiencing pain and sleeplessness. After another doctor visit and x-ray, she received a second antibiotic for suspected pneumonia. The pain while reclining persisted for months, and the water retention never fully resolved. She struggled to resume running due to swollen legs but persisted to try eliminating excess fluid.

Concerned about the persistent edema, Stacey experimented with various diets—no salt, fasting, high protein/low carb—but saw no improvement. During online research, she discovered Adult Nephrotic Syndrome and Minimal Change Disease, conditions she hadn't previously connected to her symptoms.

At her next checkup, Stacey requested tests for blood protein levels and urinary protein. When initially told her bloodwork looked good except for needing more protein, she inquired about her urinalysis. After a delayed response confirming protein in her urine, she was asked to provide another sample but instead sought a specialist.

Fortunately, she quickly secured an appointment with a nephrologist who confirmed her suspicions. A February 2019 biopsy revealed Minimal Change Disease (MCD), beginning her journey of relapses and medication adjustments. Though challenging, Stacey considers herself fortunate—she's avoided hospitalization, generally responds to treatment, maintains an active lifestyle, and found support through NephCure and Facebook kidney disease groups.

To read more stories like Stacey's, visit NephCure.org!

National Kidney FoundationApr 24, 2025

NKF is urging committee members to reject Medicaid cuts that would harm people with kidney disease. The kidney patient community is particularly vulnerable to changes in coverage, as consistent access to care is literally life-sustaining. #MyKidneyVoice

Kidney Research UKApr 18, 2025

After leaving her life in New Zealand, Jennie is running in the TCS London Marathon following her decision to donate a kidney to her twin sister, Sue, who was diagnosed with IgA nephropathy in 2017.

“Sue is a bright and bubbly person, but as her kidney function declined, she began feeling cold and tired with persistent headaches. She’d lost her spark and was very unwell. I didn’t think twice about donating my kidney. I don’t need two, and it has made a huge difference to Sue’s life.

“It was hard going through so many ups and downs, but being motivated by love for my sister kept me going. The testing process was challenging, but I had no worries about the operation itself, and my recovery was quick.

“For Sue it has been transformative. She has twin daughters, and they wrote a lovely message about how nice it has been to have their mum back. She has had a new lease of life.

“I’m excited and terrified about running the marathon! I’m just following my training plan as best I can. It will be great to have the support of Sue and the rest of the family cheering me on the day.

“I want to help fund research. It seems crazy to me that both my sister and brother-in-law have the same disease, but we don’t know the causes. Nobody can tell us how or why it has happened. If researchers can better understand that, maybe we can stop it and put an end to kidney disease.”

Read the full story here: https://bit.ly/4ikAAbB

[Image description: 1 – Jennie and Sue are sitting in a hospital room. Between them is a small table with drinks, paperwork, medicine and a flower. Both of them are smiling at the camera. One is in a blue and white polka dot dressing gown and the other is in a hospital gown with tubes coming out of their body. Behind them is a hospital bed and sink.

2 – Jennie and Sue posing for a selfie, standing close together, on a sunny day in a forest. The sun is shining on their faces with the shadows of trees visible on them. Behind them are big trees, fern bushes, and bluebells. They both have straight blonde hair and are wearing casual t shirts and jackets.

3 – Jennie and Sue posing for a photo smiling. They appear to be on holiday in a hat or gift shop. They are both wearing straw hats, with other hats visible in the background. One is wearing a royal blue dress, white bag, and dark sunglasses are hanging on the neckline of the dress. The other is wearing a light pink dress with black and red leopard spots all over. They both have curtly blonde hair.

4 – Jennie and Sue posing for a photo on a beautiful sunny day. Behind them is Waiau river bridge, Hammer Springs in New Zealand. The river is a blue, green colour, and all the trees, plants, and grass in the background are lush green. Both of them are smiling with sunglasses on their heads. One is in light blue jeans, a black top and jumper and the other is in black jeans, a white knitted jumper and a white sleeveless gilet.]

National Kidney FoundationApr 15, 2025

Almost 30% of donor kidneys are discarded every year and that number has been on the rise. It’s time to reimagine our transplant system and ensure that everyone who needs a kidney can get one. #TransplantsForAll#DonateLifeMonthhttps://bit.ly/4cn5q1Z

American Kidney FundApr 16, 2025

Did you know that autosomal dominant polycystic kidney disease (ADPKD) is the most common type of polycystic kidney disease (PKD)? ADPKD causes cysts to grow in the kidneys and occurs in 9 out of every 10 people with PKD. Learn more about signs, symptoms and treatment options for ADPKD: https://bit.ly/42ilUnv

IgA Nephropathy FoundationApr 14, 2025

🎥 Meet Amanda L., one of our inspiring IgA Nephropathy Foundation Ambassadors!

She’s navigating life as a post-transplant IgAN warrior with grit, grace—and a splash of creativity. Hailing from Bensalem, PA, Amanda is not only an artist but also an axe and knife thrower. (Yes, you read that right!)

Watch her share her story and how she stays empowered after transplant.

IgA Nephropathy FoundationApr 11, 2025

❤️💙 DON’T MISS OUT ON YOUR OPPORTUNITY TO CONNECT ⁠

We invite you to join our monthly virtual IgAN Support Groups! We hold these virtually on the third Mon/Tues of every month to give IgAN patients and care partners an opportunity to meet each other and share their journeys.⁠

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⁠[Virtual] Caregiver|CarePartner Support Call⁠

Tuesday, April 15th 7PM ET⁠

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⁠[Virtual] Patient Support Group⁠

Monday, April 21st 7PM ET⁠

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Full schedule of upcoming support groups and other events at igan.org/events

IgA Nephropathy FoundationApr 03, 2025

"Today's approval marks an important milestone for people living with IgA nephropathy, offering a new option that can be seamlessly integrated into their existing treatment plan, with no REMS requirement," said Richard Lafayette, M.D., F.A.C.P., Professor of Medicine, Nephrology and Director of the Glomerular Disease Center at Stanford University Medical Center, and Vanrafia ALIGN Study Investigator and Steering Committee Member. "Vanrafia is a selective ETA receptor antagonist that effectively reduces proteinuria, a major risk factor in IgAN. Taking early, decisive action is critical to help improve outcomes for these patients who too often progress toward kidney failure." source: Novartis.com

Our future looks bright. You are not alone. ❤️💙 As soon as we receive patient facing materials we will update this post and share with our IgAN Community.

Learn More

IgA Nephropathy FoundationMar 18, 2025

From a kitchen table in New Jersey to a global movement—what a journey it has been! The IgA Nephropathy Foundation was born out of necessity, fueled by a deep desire to support patients, drive research, and ensure that no one faces IgAN alone.

As we get ready to celebrate our 21st anniversary, I’m incredibly proud of how far we’ve come—from funding critical research and advocating on Capitol Hill to launching groundbreaking programs like IgAN Care and expanding our reach globally. But our work is far from over.

We invite you to read our latest feature in Seminars in Nephrology, where we reflect on our progress, the challenges ahead, and our unwavering commitment to finding a cure.

To every patient, caregiver, researcher, and supporter—this milestone is yours as much as it is ours. Thank you for being part of this journey. YOU ARE NOT ALONE ❤️ 💙

- Bonnie Schneider

IgA Nephropathy FoundationMar 17, 2025

🚨 It’s Official – SPARK CHICAGO 2025 is SOLD OUT! 🚨

As of 10:00 AM ET, all spots for SPARK have been filled—for the 4th straight year! We are incredibly grateful for this IgAN community and the promise of hope that SPARK brings to all of us.

Missed your chance to register? Don’t worry—you can still join the waitlist, and we’ll do our best to get you in!

Thank you for your unwavering support. We can’t wait to make this year’s SPARK our most impactful yet! ❤️💙

130 days away ⏰️ 🗓️

Learn More iganspark.org

IgA Nephropathy FoundationMar 13, 2025

Join Us in Recognizing World Kidney Day!

Kidney health matters to all of us. While IgA Nephropathy is one type of kidney disease, chronic kidney disease (CKD) affects approximately 850 million people worldwide. If left undetected and untreated, CKD can lead to kidney failure, severe complications, and even premature mortality. By 2040, CKD is projected to become the 5th leading cause of years of life lost, underscoring the urgent need for global awareness and action.

This World Kidney Day, let’s come together to raise awareness, promote early detection, and advocate for better kidney health for all. Learn, share, and take action—because every kidney counts!

IgA Nephropathy FoundationFeb 28, 2025

📢 Today is Rare Disease Day – Show Your Stripes for IgAN!

No one fights IgAN alone. Today, we stand together to raise awareness for IgA Nephropathy and the millions affected by rare diseases worldwide.

Living with IgAN—or caring for someone who does—comes with challenges, but your story has the power to inspire and drive change. ❤️💙🦓

Join us in spreading awareness! Use our social media toolkit and share your story, post a photo, or use our graphics with #RareDiseaseDay#ShowYourStripes#IgAN

Let’s make an impact—together.

https://conta.cc/3Xp0lQt

IgA Nephropathy FoundationMar 03, 2025

Stress can be overwhelming. Take it one breath at a time.

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Ever have one of those days when your to-do list is a mile long and you just don't know where to start? Stress can be helpful in moderation, but too much can leave you feeling dysregulated, anxious, and constantly on-edge.

If you're having one of these weeks—or just need some help taking a breather (literally)—here are three techniques to regulate your nervous system:

💙 Try a physiological sigh — two quick inhales through the nose then a long exhale through the mouth.

💙 Hum, sing or laugh — sounds silly but it can help to stimulate the parasympathetic nervous system.

💙 Put your feet on the ground — and if you're barefoot, even better. “Earthing” can rebalance your nervous system.

Reminder: All members receive a free Calm subscription to share with their family. Unlock your member benefit today.

O. felineus Infection Impacts Kidney Function

Researchers found that infection with O. felineus, a liver fluke, is linked to kidney damage and IgA nephropathy. This connection suggests that people infected with O. felineus may need careful monitoring of their kidney health.

Long-term outcomes in IgA Nephropathy vary widely

Patients with IgA Nephropathy often face poor long-term outcomes, with many experiencing kidney failure. Persistent proteinuria is a significant risk factor for rapid kidney function decline.

IgA Nephropathy FoundationFeb 14, 2025

PSA: Just in case you forgot, tomorrow is Valentine’s Day AND National Donor Day!

Don't worry, we’ve got you covered with some neph-tastically funny, shareable Valentine’s cards! 💕 Because nothing says love like a good kidney pun.

Tag your fellow IgAN warriors, kidney lovers, and rare disease rockstars—spread the love and the laughs! ❤️💙

IgA Nephropathy FoundationFeb 12, 2025

Representation matters. We’re amplifying the voices of African American patients and caregivers in the IgAN community—because every experience brings us closer to a more informed and inclusive future. ❤️💙

IgA Nephropathy FoundationFeb 16, 2025

❤️💙 DON’T MISS OUT ON YOUR OPPORTUNITY TO CONNECT ⁠

We invite you to join our monthly virtual IgAN Support Groups! We hold these virtually on the third week of every month to give IgAN patients and care partners an opportunity to meet each other and share their journeys.⁠

⁠

⁠[Virtual] Patient Support Group⁠

Monday, February 17th 7PM ET⁠

⁠

⁠[Virtual] Caregiver|CarePartner Support Call⁠

Tuesday, February 18th 7PM ET⁠

⁠

⁠

Full schedule of upcoming support groups and other events at igan.org/events

Felzartamab Reduces Proteinuria in IgA Nephropathy

Researchers found that felzartamab helps reduce proteinuria and maintain kidney function in people with IgA nephropathy, potentially allowing for less frequent treatment.

Renalys Pharma Completes Enrollment for Sparsentan Trial in Japan

Renalys Pharma has finished recruiting patients for a trial testing sparsentan, a medication aimed at slowing kidney function decline in people with IgA Nephropathy. The results could lead to its approval in Japan.

IgA Nephropathy FoundationJan 29, 2025

Happy Lunar New Year - Welcoming the Year of the Snake

As we enter this new year, let's embrace the wisdom, flexibility, and growth the Snake represents. This is a time for renewal, strength, and thriving in the face of change.

Kelly Chen, a Nephrology Nurse Practitioner, IgAN patient, and member of our Medical & Scientific Advisory Board, shares how her family celebrates this special time:

"Lunar New Year is a time for family to come together and wish each other good fortune, prosperity, peace, health, and happiness. The foods we share carry deep meaning—dumplings symbolize wealth, nian gao (sticky rice cake) represents growth, fish sounds like abundance, and tang yuan (sweet rice balls) signify unity. I also love exchanging red envelopes to spread happiness and good fortune. This Year of the Snake will be extra special since I will be getting married!"

Wishing our IgAN community a year filled with abundance, unity, and new beginnings! ❤️💙 #YearOfTheSnake#LunarNewYear#IgANCommunity

IgA Nephropathy FoundationFeb 03, 2025

If you can't have a good day, just have a day. That's good too.

Sometimes you just can't. Life feels colorless, there's nothing to look forward to, and getting out of bed feels pointless. Been there, done that, rotted in bed.

Even though we know we won't feel down forever, it doesn't make it easier. When you just can't with life, activate our "CAN'T" method.

❤️Comfort: Find comfort in something (a cup of tea or time in bed)

💙Action: Take a small action that might make you feel better (make your bed, meditate)

❤️Notice: How did that action make you feel? Any shifts in your mood?

💙Talk: Reach out to someone and tell them how you feel (isolating feels tempting but rarely helps)

We can't promise this will make you feel better, but it might distract you for a bit, which is a win.

Reminder: All members receive a free Calm subscription to share with their family.

Get Started Today

https://www.calm.com/b2b/iga-nephropathy-foundation/subscribe