What is Polycystic Kidney Disease PKD
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (...
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My Very First PKD Walk - Any Advice?
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I just signed up for my first PKD walk ever!
Does anyone have any advice for fundraising or for the day of the walk? (It's a 2 mile walk on October 4th, 10am in Baltimore, MD - if that makes a difference.) This is the link to my profile thing. http://www.pkdcure.org/Default.asp... It has a little story and a pic. (I don't think there is much else you can do with it other than edit the story and pic) Does anyone have advice as to what I should add, remove or change on the story? I kept most of the default stuff (but I did edit it a little). (I know the site has some advice, but I wanted to ask here too and see if anyone has anything different to say or add. I like to get all angles.) Thanks! I'm really excited to finally meet other people with PKD in person (never have). So if anyone else is going to be part of this walk let me know. P.S. Registration is free if you'd like to join. And they have some kind of virtual walk thing too. So you don't even need to actually come to the place. I'm sure other places have this too. So, you could go to the general site and look up a place closer to you. Posted on 08/20/09, 05:08 pm |
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Oh, if you click the link, to get to my profile you have to click the Donate to a Walker button on the left. (But you don't have to donate, not asking for donations, just advice). Then write my name (Alona Snyder). I'm the only one that comes up. Click on my name and it takes you to the profile so you can read what I wrote. 
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Alona,
I wish and all of the 4000 other people who will be out on the weekend of 12-13 September nationwide as well as on those random dates for some others walks (e.g. Baltimore and a couple of other sites) the very best. But this and the other online PKD support groups aren't the forum to solicit donations. I know you mean well, but if you and every other walker posts their walk web site on this and other PKD messages board, that's all we'd hear about for weeks if not months on end. That said, the walks are a great way to meet people in your community who have PKD, just like you. I was the chapter and walk coordinator in DC for a number of years and although the walks were incredibly labor intensive, I still loved them. It's incredible to look out on a sea of teal t-shirts and know that there's a whole community who understands what you're going through. They've been where you are now, where you're going and they'll be with you throughout the process. You may even discover a school mate or neighbor is at the walk; neither of you knew you shared this journey together. I've met wonderful people through the chapter and at the walks, many of whom I keep in touch with on a regular basis even though I'm no longer involved in the chapter activities. The walks are also a very labor intensive event requiring extensive preparation, so if you have some spare time and want to lend a hand, either now before the walk or on the day of the event, contact the walk coordinator (email address is on the main page for your walk) and offer your services. I'm confident he/she will be more than happy for some assistance and has plenty of work that needs to be done! For fundraising, use the email feature in your walk webpage to send emails and links to your walk web page to solicit donations from your friends and family. You can customize your email for each individual or send a mass email them all at once. You'll have a fabulous time! Enjoy! Ruth
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Hi, msfur08!
Invite your friends by email to look at your profile and ask if they want to donate. There should be "form letter" that gets sent! I'll be doing this soon in New York City! Peace and Blessings! Coach Richie http://www.innergameofpkd.com
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I am doing the walk on September 27th in Chicago. I sent out a facebook notice and lots of folks responded...so many that we formed a team and many are getting their own sponsors. I'll be joined my friends and family in honor of my mom who died of complications from PKD. I am kind of excited to meet others with PKD face to face..I have only ever met one person outside of my family with PKD.
Have fun on your walk!
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