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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health, Kidney Diseases

Mission: It is our mission to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for Polycystic Kidney Disease and improve the lives of all it affects.

Programs: Peer-reviewed medical research focused on finding the causes and a cure for PKD.

Community Stories

10 Stories from Volunteers, Donors & Supporters

1 hcambareri

Volunteer

Rating: 5

The PKD Foundation is the only organization in the world devoted solely to helping those affected by polycystic kidney disease (PKD). Their dedicated and efficient staff are incredibly committed to their mission and have effectively helped to educate and empower PKD patients worldwide. Through my involvement with the PKD Foundation, I gained the knowledge and support to help me better live my life with PKD with hope for the future. I can also honestly say that our involvement with this organization and the contacts and information gained saved my father's life. The PKD Foundation is our best chance for a cure, and already they have hoped get us very close to a treatment. Education, Advocacy, Support, and Hope. This is what the PKD Foundation has done for my family.

Previous Stories
1

Volunteer

Rating: 5

The PKD Foundation has been a resource for information for my family since the late 80s, when my father's kidneys started to fail due to PKD. Since that time I've turned to the PKD Foundatin for information often, through my own diagnosis, pregnancies and kidney infections. With a disease that can leave you feeling helpless, I've found empowerment through information and thanks to info I learned from the Foundation I'm now in a clinical trial and hopeful that I might be able to put off kidney failure. I volunteered to coordinate our local Chapter in 2004 and have been impressed by all the staff at the PKD Foundation, how dedicated everyone is to the cause, and how frugal they are with expenses to ensure that every penny possible goes to programs for patients and RESEARCH! I am thankful EVERY day for the PKD Foundation and the hope it gives to families like mine.

Donor

Rating: 5

A great organization about a not well know disease.

Review from CharityNavigator

1

General Member of the Public

Rating: 5

I've been affected with PKD all of my life but it didn't really get hold of me until I got salmonella poisoning which excellerated it. I have also lost good enough vision to drive which leaves me to depend on others to get anywhere other than home. I've had 4 living donors willing but they were all eliminated because of health problems of their own. Sometimes I've felt so alone and forlorn but I could always reach out to this foundation for a friendly voice, comfort and encouragement. I want badly to help to bring awareness to this disease and help to raise funds for the foundation but have not been successful as yet. I will keep trying. There is a boy who is 24 that is in dialysis with me who has been sick since he was 6 years old. It's bad enough when you're older to get smacked with this awful disease but to see children stricken so young breaks my heart. I have 2 grown children and 5 grandchildren and I hope I did not pass the gene down but I do not know. I'm glad for the new laws coming into affect that will stop the insurance companies from punishing people for pre-existing conditions. Then they can get tested. I watched my father die from this in the 1960's. He was so brave right up to the end. And there wasn't much known about it then. I've had to put the pieces together now that I have it. It is an awful feeling to know that part of you is broken and cannot be fixed. A cure needs to be found. There are so many people willing to raise money for cancer and aids but PKD, not so much. I worked most of my adult life in the film industry and have some pr experience. I continue to try to get a celebrity or two to get interested and be a spokesperson but the PKD Foundation is doing all the work on their own and I love you guys for what you do. Thank you. Thank you for being there and for all of your hard work.

2

Volunteer

Rating: 5

Four years ago I had two "healthy" boys and was pregnant with my third son. At 34 weeks I was told I did not have amniotic fluid and my son was delivered the next day. His lungs were very underdeveloped at birth and it was touch and go for a few days. When he was 4 weeks old he was diagnosed with ARPKD (the recessive and rarer form of PKD). A few weeks after the baby was diagnosed my then six year old was diagnosed with ARPKD as well. We immediately began searching for information on ARPKD and found the PKD Foundation. Three months after we learned of our boys' diagnosis we went to our first PKD Convention. SInce then we have participated in 4 Walk for PKD events, gone to 4 PKD Conventions, and for the past 2 years I have been the co-coordinator of the National ARPKD chapter. The PKD Foundation has helped me learn to advocate for my boys and has given me a lot of information on ARPKD. It has also connected me with the best doctors in the field. And to me the most important thing the Foundation has done is to connect me with other families with children with ARPKD.

6

Donor

Rating: 5

When diagnosed with PKD years ago I turned to the Internet for information. For a disease that affects so many, informative sites were few. Those that offered information offered little hope. Though it was small at the time, the PKD Foundation has grown dramatically to become a well-respected organization offering hope, information and community to people affected by PKD. The organization funds cutting edge research, consolidates accurate information, organizes advocacy efforts, and provides a central location for community. Through the PKD Foundation generations of people living with this disease can find everything from kidney-friendly recipes to published medical studies paving the way to finding what will hopefully someday be a cure. Being able to connect with others who live with PKD and knowing that somewhere there is an organization working hard to research, monitor, and most importantly raise funding to find a cure makes living with PKD seem not-so-scary. I applaud this organization for putting a light at the end of a diagnosis that seemed like a very dark tunnel at the time.

1

Volunteer

Rating: 5

I have PKD and have been a volunteer for the foundation for the past 7 years. The PKD Foundation educates the public and medical community about PKD. The foundation also works continuously to raise much needed funds for research to fing a cure for this devastating genetic disease.

1

Board Member

Rating: 5

As a newly diagnosed PKD patient without family history nearly 11 years ago, the PKD Foundation became my source of information and support helping me cope with the uncertainty and fear I experienced at that time. Being involved with this organization has given me the opportunity to participate in education and advocacy programs, fund raising events, and connect with others battling this disease. Additionally, I have had the opportunity to participate in cutting edge research studies sponsored by the PKD Foundation. Everything we do takes us one step closer to being part of the PKD solution. Our organization is unique in that all Chapters are volunteer based and supported by one home office in Kansas City MO with only 53 employees. I applaud the PKD Foundation for being the only not for profit organization taking the initiative to positively impact the lives of more than 12.5 million PKD suffers worldwide.

1

Volunteer

Rating: 5

The PKD Foundation help educate people about Polycystic Kidney Disease. There are many support group throughout the USA and abroad to help others understand this genetic disease. Fundrasing is another important part of this foundation. Money raised is given to doctors, colleges, universities and others to search for a cure. Also another point is the high rate of money that goes to research, and the low rate that goes to executives. Thanks PKD Foundation.

10

General Member of the Public

Rating: 3

I have PKD. This foundation has been raising money to help fund medical research that could be done to help bring an end to this life-threatening disease. If there is ever an end to PKD, it will be too late for me, but somebody will appreciate it.