Fighting PKD!

[pelagia]

What can we do to fight PKD?

The PKD Foundation reports in it's latest newsletter that less than 14,000 people participate in the Walk for PKD each year.  In 2007 these folks raised about $3 million. (a little over $200 per walker)

This compares with the 2007 Multiple Sclerosis Walk, which raised $55 million and the Great Strides Walk for Cystic Fibrosis, which raised $35.5 million.  Both diseases are far less prevalent in the population than PKD.

If 5% of the PKD patient population walked each year, there would be 30,000 participants. If each walker asked 3 friends to join them, there would be 120,000 walkers.  If each walker could raise an average of $250, that would be a total of $30 million dollars for research and education.







EDITED:Moved to general discussion topic area-kitkatz,moderator

[stauffenberg]

The problem with all these popular fundraisers to collect money to donate for research to cure various diseases is that the money raised is almost always utterly wasted by the medical researchers who receive it.  If you look through medical journal publications, you will find that almost all the research being done on various diseases has absolutely nothing to do with a cure, but is instead only addressed to issues of basic science.  So for every 20 articles on "Rates of Fingernail Growth in Type 1 Diabetes as a Function of Uric Acid Levels: The Alkaline Hypothesis," you will see one article on "Can Insulin Analogs Derived from Lettuce Leaking Reprogram the Diabetic Autoimmune Response," which could indirectly lead to a cure five to six hundred years.  The most frustrating thing is when you look at the conclusion of the article, where the authors express their thanks for the research funding they received to do their utterly useless work, and you see that much of the money squandered was raised by desperate patients, spouses, and parents thinking the money was going to be devoted to finding a cure.

[pelagia]

You can be negative and I will continue to be positive.  I'm pretty sure that no cure for any disease will ever be found if research isn't done.  Yes, research is expensive and yes, not all research pans out, but in the end, you are alive today because of research.

[twirl]

I wish I felt like walking and could afford to go where the walks are held
I almost wish someone famous and loved would come out with PDK
not wishing harm on anyone but if they have it anyways they could make it public

[pelagia]

First, let me say that as important as raising money is, raising awareness is critical.  Think how many folks don't even know that they have PKD.  Think how many folks don't know much about PKD or any other kidney disease.  Doing a campaign once a year gives me a chance to help educate others.

You do not have to be in a place where they are holding a walk to be involved.  You can have a virtual team and walk anywhere.  It could be a virtual IHD team with folks walking in a park where they live. 

Maybe you will feel like walking next year Twirl and you can be team captain.  I would help you.

Part of my team is walking on September 20th as part of the "official" walk and the rest of us are walking on the 27th because we all have to be out of town on the 20th.  One of my teammates can't make it to either walk, but she is participating anyway in order to help the cause.

Twirl - you could even join my team if you wanted.  I would love to have you and would be very honored.    And even if you never feel up to it, don't worry because you will continue to be an inspiration. 

"You may say I'm a dreamer, But I'm not the only one. I hope someday you'll join us..." John Lennon

[dkerr]

There are challenges with finding out you have PKD and not a wholelot you can do about it when you do.  I can't get life insurance.  I was diagnosed when I was in my early 30's.  I'm near 60 and now am facing the complications of it head on.  My son knows he has it, my daughter hasn't been checked for it.  I'm not going to encourage her to.  I've asked her to watch out for some things ie caffeine, alot of protein,blood pressure and so on. 

[twirl]

dkerr 
my daughters have PKD
my son, we do not know
my nep told me not to go looking for PKD for insurance reasons
my twin and older sister do not have pkd
my grand daughter has one cyst
and our grand son may have problems--- he will arrive in a couple of weeks or so
I am fighting a losing battle with pkd
everyday I can tell

[dkerr]

Twirl - My mother died as a side effect of her transplant back in 1969 (cancer), my sister has PKD, I have PKD, and my son has PKD.  I know Neil Simon and Erma Bombeck both had PKD.  I'm hoping to make it on dialysis and not try for the transplant because of a family history of cancer beyond my mother.

I see dialysis as a way to stay alive, although I'm honestly not looking forward to it, but looking forward to feeling better than I do.

I appreciate the support from everyone.

[xtrememoosetrax]

Pelagia, thanks for bringing this up -- the kidney walk, that is.  I'm looking into it. There is no walk here, so I will have to do it virtually, which actually suits me just fine; the problem is that I could use the exercise!   Anyway, thanks again.