PKD Foundation

The Annual Honey Fest – A PKD Charity Event is back this weekend! Join the PKD community this Saturday, September 14th, for a music and arts festival in Elverson, Pennsylvania. Enjoy a family-friendly atmosphere, live music, and incredible vendors. Learn more ⬇️ https://lnkd.in/gM2P_dqq.

Meet PKD Researcher, Dr. Vishal Patel, an Assistant Professor of Medicine at the University of Texas Southwestern Medical Center and the Chair of the Scientific Advisory Panel at the PKD Foundation. His research focuses on understanding the genetic causes of polycystic kidney disease (PKD) and developing therapeutic strategies, such as the promising drug candidate RGLS8429, to potentially slow or reverse disease progression. “As chair of the Scientific Advisory Panel (SAP) at the PKD Foundation, I am continually reminded of the pivotal role the SAP plays in guiding PKD research. Our collaborative efforts ensure that we are not only funding but also strategically advancing studies with the most potential to make a tangible difference. Looking back at my own 2014 research, it’s clear how those foundational studies funded by the PKD Foundation directly influenced the current clinical trials of RGLS8429. By understanding the genetic underpinnings of PKD and identifying promising therapeutic targets, we paved the way for RGLS8429 to emerge as a candidate drug. Today, RGLS8429 represents a new hopeful medicine for people with PKD. It is designed to address the root causes of kidney damage in PKD, potentially slowing or even reversing disease progression. Our hope is that this drug will improve life expectancy and quality for PKD patients, making it one of the most promising advancements in our fight against this challenging disease.” Learn more about PKD Foundation-funded research at https://lnkd.in/gUDdu3i.

“I walk for PKD because I want to do my part to help fight and put an end to PKD. I also want to raise awareness of this little-known disease. My own story began in 1997. When my family doctor ran a CT scan, multiple cysts were found on both my kidneys. I was referred to a nephrologist who definitively stated that nothing was wrong. But with my gut and the research I’d done, I knew he was wrong. It took me six more years of seeing various nephrologists in different states to find one who confirmed I had PKD. Fortunately, at that time, I experienced no symptoms. I was at a steady Stage 3. Then in 2020, I experienced a UTI. My family doctor put me on medications, which unbeknownst to me was a "deadly triangle" of medications, causing further kidney function decline. Now I’m in Stage 5 kidney disease or end-stage renal disease. My nephrologist is recommending I go forward with dialysis or a transplant. Neither is a cure, but a treatment with serious side effects. Through a whole-food, plant-based, low-protein diet, I hope to delay the inevitable for as long as possible. This is my second year in a row participating in the Walk for PKD because PKD is a serious, insidious, life-threatening kidney disease. I’m asking friends and family for support. Any amount, small or large, will be appreciated. I’m one of 600,000 Americans suffering from PKD. My story is just one of so many. There is no cure for PKD, but fundraising will help us find one. This is why I walk for PKD and why I donate regularly.” Thank you, Frances, for walking with us to #endPKD. Your participation will help change the course of PKD. Register today for the Walk for PKD at walkforpkd.org

Today is #PKDAwarenessDay a cause that’s incredibly close to my heart. Polycystic Kidney Disease (PKD) runs in my family, and I’ve seen firsthand the challenges it brings. This genetic disorder causes numerous cysts to grow in the kidneys leading to kidney enlargement and impaired function. Over time, this can result in kidney failure. There’s currently no cure, making awareness and advocacy crucial in the fight against this disease. This journey has motivated me to be as involved as I can with the PKD Foundation-advocating for those affected, educating others about this disease, and fighting for a cure. Awareness is the first step towards change, and together we can make a difference. To all those battling PKD or supporting loved ones, you are not alone. Let’s continue to spread awareness, support each other, and push forward in our fight for a cure. 💪🏼 💙 #WalkforPKD #Advocacy #ADPKD #ARPKD #PKDWarriors

It’s not too late to make a difference this PKD Awareness Day! Here are some impactful ways you can get involved… 👟 Register for the Walk for PKD! Be a part of our largest gathering of the PKD community at walkforpkd.org 🔬 Contribute to vital ADPKD research by signing up for the ADPKD Registry at pkdcure.org/registry 📣 Become an advocate and help amplify the voices of the PKD community to Congress at pkdcure.org/advocacy/acn/ 🤝 Volunteer with us to make an impact in your local community. Learn more at https://lnkd.in/gQcnQ7Ch

"Hi, we’re new here! Today is Harper’s first PKD awareness day with her diagnosis. PKD is the fourth leading cause of kidney failure. My dear child is an overachiever with her rare ARPKD. Getting a diagnosis like this for your child is so scary, but we want to bring awareness to the disease so that when she grows up, she grows up in a medical field that has so much more knowledge and support for her and her peers with PKD. She has already had one major surgery to help her body function better, and will most likely need a kidney transplant and/or dialysis in the future. Please feel free to share this post, we’re spreading awareness, people." ❇️❇️❇️ It's PKD Awareness Day! Today we are sharing stories from our communities to raise PKD awareness so more people understand the impact of this generational disease. If you want to share your story, tag us and use #PKDAwarenessDay.

Today is PKD Awareness Day, and as President and CEO of the PKD Foundation, I’m honored to stand with our community in the fight against polycystic kidney disease which impacts over 600,000 people in the U.S. and millions internationally. Polycystic kidney disease is the 4th leading cause of kidney failure and one of the most common genetic diseases, yet it remains relatively unknown compared to other genetic conditions. Today and every day, we’re dedicated to changing that. By raising awareness, we can drive more resources toward funding essential research, providing better support to those affected and their loved ones, and accelerating a cure. This year, join us in amplifying our efforts by sharing stories and engaging with our community to ensure that the significant impacts of PKD on generations of families is recognized. One of our key resources for PKD Awareness Day is an exclusive "Ask Me Anything" session featuring two leading experts in PKD, Dr. Vishal Patel and Dr. Fouad Chebib. I encourage you to watch, learn, and share to help us spread the word. I believe in the power of awareness to inspire action. Today, let’s all take a moment to educate ourselves and others about PKD and show our support for those living with this disease. #PKDAwarenessDay

In honor of PKD Awareness Day, we’re excited to share this special 'Ask Me Anything' session featuring two of the leading experts in polycystic kidney disease. Dr. Fouad Chebib M.D. and Dr. Vishal Patel, M.D., and Chair of the PKD Foundation Scientific Advisory Panel. They are answering some of your most pressing questions about PKD. Watch the full recording to gain insight into many topics that impact the PKD community. Watch the full recording here to gain insight into many topics that impact the PKD: https://lnkd.in/g4DeMP5A

"Hello everyone, my name is Nouf AlDossari, and today is PKD Awareness Day. This is my story🤍 When I was a baby, I was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD), a rare condition that affected my kidneys and liver. It was a challenging time for my family and me, and it changed our lives profoundly.🤲🏼🥹 In 2002, my condition led to the need for a kidney and liver transplant. That moment was both an end and a hopeful new beginning. The recovery was tough, but it taught me a lot about strength and resilience. Now, I live with one kidney and manage my health with regular check-ups and medication. Beyond managing my condition, I use my skills as a videographer to create content that brings joy and inspiration. My videos aim to uplift and connect with others, showing that even when life is tough, we can find reasons to smile and stay hopeful. I hope my story and my work encourage others to face their challenges with courage and to find moments of lightness and inspiration in their own lives.💜🇸🇦" ❇️❇️❇️ It's PKD Awareness Day! Today we are sharing stories from our communities to raise PKD awareness so more people understand the impact of this generational disease. If you want to share your story, tag us and use #PKDAwarenessDay.

Thanks to the incredible efforts of our volunteers, San Antonio, TX, Easley, SC, Washington, D.C., Phoenix, AZ, and Baton Rouge, LA have officially proclaimed September 4th as PKD Awareness Day! Thank you to Jeannie Brown, Patti and Mark Ruffin, Andrew Newhart, Risa Simon, and Danyelle Tovall, for making this possible. These proclamations are a big step toward increasing understanding and support for those affected by PKD.