PKD Foundation

Today I was able to go to the Capitol with the PKD Foundation and speak with Virginia Congresspeople about important issues regarding rare disease research funding and live organ donation. I was diagnosed with Polycystic Kidey Disease about a year or two ago. I am a third generation PKD patient and getting my diagnosis inspired me to join as a volunteer for the PKD Foundation to look for a cure and raise awareness. PKD affects about 600,000 Americans and it is so important to advocate for research now more than ever as we get closer and closer to a cure. Thank you so much to the PKD Foundation for bringing us all together from many states to talk to legislators on the hill. Everyone at the organization both volunteers and staff are so incredible and inspiring and I’m so excited to keep volunteering in the future.

Today, I was proud to meet with federal lawmakers and staff to urge their support for policies that will advance PKD research, treatment, and care! Thank you PKD Foundation for organizing this year’s advocacy day!?#EndPKD #PKDAdvocacy

“The energy at the Walk and the people you meet is like no other event, but these events wouldn’t be a success without our volunteers,” says Houston, Texas Walk for PKD Ambassador Sam Asmus. The Walk for PKD brings together an incredible community of patients and loved ones all united in the goal to end PKD. None of this would be possible without our dedicated volunteers. Make a difference in your community and Volunteer today. https://lnkd.in/gxWR9Zi7

Finding a cure for PKD has always been at the core of our mission. For more than 40 years, the PKD Foundation has been the only organization in the U.S. solely dedicated to funding research that brings us closer to that goal. Since 1982, we’ve proudly funded 1,300+ research projects and helped leverage $1.5 billion in additional research funding to drive progress. Now, that progress is at risk. Congress is considering a 57% reduction in funding for the Congressionally Directed Medical Research Programs (CDMRP)— a critical source of funding that has driven breakthroughs in PKD research. Sustained investment in research is essential to developing new treatments and, ultimately, a cure for this devastating disease. Your voice can make a difference. Join us in urging Congress to protect CDMRP funding and ensure continued progress for PKD patients and families. Take action today: https://p2a.co/5rwekfw

Navigating a PKD diagnosis can feel overwhelming, but you don’t have to do it alone. In honor of World Kidney Day and this year’s theme, “Detect Early, Protect Kidney Health,” we invite you to watch this 2023 PKDCON session, “How to Navigate the PKD Diagnosis Process,” presented by Ronak Lakhia, M.D. In this session, you’ll learn how to get a second opinion, the best methods to prioritize information, and tips for customizing your personal medical care. https://lnkd.in/gt34uNDN ?????? PKD families count on resources like this—a gift from you today can help us expand our educational resources. From webinars to handbooks, your donation will make it easier for everyone to find the tools they need to manage life with PKD. Give today. https://lnkd.in/g7SBT45Y

“My name is Casey Medert and I found out I had PKD when I was 21 years old. At the time, I was in college and trying to figure out what I wanted to do with my life. No one in my family had PKD. I had no idea how this could affect my life, and it became a very scary time for me at such a young age. Fast forward to today: I’m now 36 years old and married with two amazing kids. While it’s still scary to be living with PKD, I find so much comfort in knowing that I have a supportive family and an amazing nephrologist who has my best interests in mind. Last year, she advised that I may potentially need a transplant in the next 10 years. She recommended that I start taking tolvaptan to decrease the growth of the cysts on my kidneys. While I’ve only been taking this medicine for a year, it’s given me hope that more advances will be made in the medical field in regard to PKD. It gives me hope that I will be present and healthy for my kids in the years to come.” New treatments and advances in PKD research don’t happen without your support. World Kidney Day only comes once a year. Join the PKD Foundation in positively impacting everyone affected by PKD. Give today. https://lnkd.in/g7SBT45Y

It's World Kidney Day and we’re raising awareness about the importance of early diagnosis for PKD patients. If left undetected and untreated, PKD can progress to kidney failure, leading to severe complications and even premature death. ?? Learn how ADPKD is diagnosed: https://lnkd.in/guiunwhC ?? Learn how ARPKD is diagnosed: https://lnkd.in/gy4wvC52 Providing patient education and care service programs is critical to our vision of ending PKD. By donating to the PKD Foundation today, you can ensure that everyone living with PKD gets the resources and support they deserve. https://lnkd.in/g7SBT45Y

It’s World Kidney Day! Today, we will be sharing resources matching this year’s theme, “Are your kidneys, OK? Detect early, protect kidney health.” Early detection and interventions like lifestyle changes can be useful tools in managing a person’s PKD journey. That's why we need your support. By expanding our education and care service programs, we can help everyone living with PKD. Unite with us on World Kidney Day. Give today. https://lnkd.in/g7SBT45Y

Registration is open for Kidney Fight (Virtual) Trivia Night! Hosted by the PKD Foundation St. Louis Community, and emceed by Trivia Riot, this fun-filled event supports critical PKD research. Registration is open to everyone, so your team (up to eight players) can join from anywhere. Learn more at https://lnkd.in/gan3tPhG

PKD makes life unpredictable for Justine and her husband, Jared. It affects everything from diet and travel to family planning. Through the ups and downs,?Justine turns to the PKD Foundation for trusted information and a supportive community to help her be a compassionate care?partner. ? “I have worked in healthcare for 19 years. I'd heard of PKD, and conceptually understood what the disease was, but it wasn’t until I met my husband and his family in 2021 that I really understood. It’s shocking how uniformed people in healthcare are about PKD... This is what motivates me to support the PKD Foundation. I want to be an advocate for those living with this disease and their loved ones. I know there are many different choices my husband would have made over his lifetime if he knew how it would impact the progression of his disease.” During National Kidney Month, you can ensure every person affected by PKD has access to the resources they need. Give Today. https://lnkd.in/gupd84_d