PKD Foundation

Rating: 4.8 stars   10 reviews

Issues: Cancer

Location: 8330 Ward Parkway Suite 510 Kansas City MO 64114 USA

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.

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Community Reviews

Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

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1 previous review
Rating: 5 stars  

10 people found this review helpful

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.

I've personally experienced the results of this organization in...

When I was diagnosed with PKD, there were no no promising treatments whatsoever. 20 years later the PKD genes have been identified and there are over 20 clinical trials in the works, and the PKD Foundation had a hand in all of this progress!

What I've enjoyed the most about my experience with this nonprofit is...

the opportunity to meet so many wonderful people who are devoted to finding a cure for PKD, and the sense of empowerment that being involved has given me.

The kinds of staff and volunteers that I met were...

all extremely devoted to the cause!

If this organization had 10 million bucks, it could...

fund spread awareness even more, fund more research, and get us even closer to a cure for PKD!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

A great organization about a not well know disease.

I've personally experienced the results of this organization in...

My little brother died from PKD as an infant, my family puts on a small neighborhood fundraiser every year and donates all of it.

If I had to make changes to this organization, I would...

increase awareness of PKD

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Review from CharityNavigator
Role: General Member of the Public
Rating: 5 stars  

10 people found this review helpful

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.

I've personally experienced the results of this organization in...

I've called and asked questions no one else could answer and sometimes just because I needed to talk to someone with knowledge of the disease. My doctor is one who seems to care more about his paycheck than my pain or problems.

If I had to make changes to this organization, I would...

I would bring in celebrities to do fundraisers and bring a broader awareness about PKD. Especially juvenile PKD. Sometimes I feel like we are the "orphans" in the world of medical problems.

What I've enjoyed the most about my experience with this nonprofit is...

The people that are involved in this organization really care. I can tell. They are always willing and responsive.

The kinds of staff and volunteers that I met were...

wonderful and kind

If this organization had 10 million bucks, it could...

Help people that need help and help people who are doing research to find a cure

Ways to make it better...

We could raise a ton of money and find a cure

In my opinion, the biggest challenges facing this organization are...

raising money, raising public awareness, and finding a cure.

One thing I'd also say is that...

I love that you are on twitter!

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

1 person found this review helpful

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.

I've personally experienced the results of this organization in...

attending conventions and learning new information on ARPKD.

What I've enjoyed the most about my experience with this nonprofit is...

meeting other families with children with ARPKD.

The kinds of staff and volunteers that I met were...

caring people who really want to help us find treatments and a cure.

If this organization had 10 million bucks, it could...

hopefully find a treatment for ARPKD and maybe even a cure!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-4-01

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Rating: 5 stars  

6 people found this review helpful

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.

I've personally experienced the results of this organization in...

I participate yearly by organizing a team to join in my local chapter's Walk for PKD. I have also elected to regularly receive advocacy updates that keep me up to date on policy changes that may affect my life as someone living with PKD.

If this organization had 10 million bucks, it could...

fund a lot of crucial research. . . .

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-1-01

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Rating: 5 stars  

10 people found this review helpful

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.

I've personally experienced the results of this organization in...

I have found support and learned a great deal about my disease PKD.

What I've enjoyed the most about my experience with this nonprofit is...

all the comraderie and support.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

7 people found this review helpful

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.

I've personally experienced the results of this organization in...

the amount of research projects impacting the potential for treatments and a cure for PKD. When I was diagnosed 11 years ago there were zero projects, whereas today there are at least 25 research projects positively guiding PKD progress.

What I've enjoyed the most about my experience with this nonprofit is...

connecting with others with PKD, meeting PKD scientific experts, and knowing that everything we do helps makes a difference for PKD patients throughout the world.

The kinds of staff and volunteers that I met were...

easy to work with....wonderful individuals with generous hearts and caring spirit.

If this organization had 10 million bucks, it could...

provide our constituents with more cutting edge research that could help end the plight of PKD.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

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Rating: 5 stars  

6 people found this review helpful

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.

I've personally experienced the results of this organization in...

I was educated I how to take better care of myself and prolong my life with PKD and PLD. As, I mentioned above, I am 4th generation to have this disease. The first to received a Liver Transplant in 2005. My family has been very active for many years

What I've enjoyed the most about my experience with this nonprofit is...

the stories they provide to educate all of us.

The kinds of staff and volunteers that I met were...

Fantastic and have become my friends.

If this organization had 10 million bucks, it could...

do more research to find a cure.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-6-01

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Rating: 3 stars  

10 people found this review helpful

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.

I've personally experienced the results of this organization in...

What I've read.

If I had to make changes to this organization, I would...

Do more advertising...more assertive marketing.

What I've enjoyed the most about my experience with this nonprofit is...

They really seem dedicated to helping end PKD.

The kinds of staff and volunteers that I met were...

Haven't met any yet.

If this organization had 10 million bucks, it could...

Fund maybe a few transplants with that kind of money.

Ways to make it better...

PKD had ended before I had to lose my kidneys.

In my opinion, the biggest challenges facing this organization are...

The fact that a lot of people are still in the dark about what PKD is and why it has to end in the first place.

One thing I'd also say is that...

I can't really benefit from seeing a cure for PKD come up, but if the PKD Foundation had a Transplant fund, to help transplant recipients (and donors too!) with their expenses...PLUS, if they could help network regarding the importance of living donation!

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2007-6-01

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