The hidden face of PKD & the man that is trying to do something about it

Mr. Bill Brazell is known in Harvard as one of the graduates that went the extra mile to make his dreams come true. As with most Harvard graduates Bill has dreams that he hopes would be the best for him and his family and provide the very best for his 11 month old daughter. But there is one thing that threatens him and his young daughter from achieving those dreams. It is known as the incurable disease PKD or Polycystic Kidney Disease. Bill has lived with it his whole life and his very young daughter has a 50 percent chance that she will have the disease which could hold off showing up till she is in her 30’s or 40’s. PKD is not so well known because the government refuses to spend more money on research. You see PKD is more common than Down syndrome, muscular dystrophy, cystic fibrosis, sickle cell anemia, Huntington's disease and hemophilia combined! Because the government does not spend but around 41 million on research to find a cure for PKD the disease is less known than all those. Because it makes no since for the government to turn its head on such a common form of kidney disease but not on others and because there is literally no celebrity that has been named as the spokesperson for PKD, Bill has decided it was going to be his job to draw awareness to the cause. And Kenny the Kidney was born.

So a few times a year Bill Brazell dresses in a silly costume of a PKD kidney and walks for a cure! In 2009 the federal government spent roughly $41 million on PKD research, in the form of NIH and Defense Department spending. That's about $68 per affected person. Meanwhile, the government spent $1,920 per affected person to study Huntington's disease, $1,600 per affected person to research muscular dystrophy, $2,833 per affected person to study cystic fibrosis, and $910 per affected person to study sickle-cell anemia. Greater awareness leads to greater funding. The PKD community isn't asking the government to spend less on other diseases. We would just like it to spend a wee bit more on PKD. Based in Kansas City, Missouri, Bill and more than 100,000 members’ world wide volunteer their time for the cause. If the government would just open their eyes and see what serious disease this PKD is there would be no issue with giving the PKD Foundation the money it needs to fund research for a cure. In fact Bill states that with just a few million more a year the research could be funded and that they are already very close to a successful treatment.

This is a clear cut case of neglect on the part of out government, Bill says that he hopes because of this that if and when the symptoms decide to start showing in his daughter later in life that it may not be a problem for her or others. Symptoms for PKD don’t usually start to show till later in life. Bill and his relatives have the dominant form of PKD, known as ADPKD. A recessive form of the disease, ADPKD, harms 1 in 20,000 babies, killing many of them before they reach the age of one month. PKD is a common genetic disorder that causes cysts to form and grow on the kidney causing the kidney to become enlarged to gross sizes and eventually failure. Because the cysts are formed where they are it can cause abdominal pain as well as back pain. The main reason that there are not enough funds allotted to this research is because not very many people have heard about PKD, so Examiner.com as well as a few others is working hard to make that change. So please go to Bill’s fundraising site here and donated what you can, together we can get the word out and together we can fund a change and hopefully open the eyes of a few celebrities and the government. Please if you are able to donate we ask that you write Examiner as your middle name, this will make it possible to track all donations coming through Examiner.com so that we can report those donations to a reporter as evidence of Examiners ability to make the needle move. This will open the door for more fundraisers for those that need extra help opening the eyes of the government to other diseases that should have more funding for research. Together Kenny the Kidney, Examiners and our readers can help this cause and make a change.

For more information:
ABC News coverage of Bill Brazell and what he is doing
What about ADPKD?