Monday, July 30, 2007

the math

Muscular dystrophy affects 50,000 Americans. The MDA collected $186 million last year - $3720 per person with MD.

Cystic fibrosis affects 30,000 Americans. The cystic fibrois foundation collected $143 million last year - $4766 per person with cystic fibrosis.

Polycystic kidney disease affects 600,000 Americans. The PKD foundation collected $11 million last year - $18 per person with PKD.

I guess that's part of why I feel so strongly about spreading the word about PKD.

Sunday, July 29, 2007

TJ turns 12

Quite the wet weekend around here, but we managed to have fun nonetheless. Friday was TJ's birthday and we went to a Renegades game. We asked them put TJ's name up on the scoreboard (in exchange for a small donation to the Pitch for Kids foundation - yet another good cause). He got a real kick out of that. Unfortunately, they were having scoreboard issues, so the message didn't show up in the second inning like it was supposed to. It finally showed up later while I was on a bathroom run with Jason and Brian, so I missed it. About the eighth inning, the rain came and they had to delay the game for about 45 minutes. Luckily, we were seated in the back row so we were pretty well protected from the rain by a small awning. After the game, they had fireworks. Brian and Jason are funny - they talk very excitedly about the fireworks until they actually start - then the hands are over the ears! Jason even kept his eyes shut this time!

Saturday we were up at MaryLou and John's for their annual family reunion. Had a good time playing various games and enjoying a feast. About 7PM, it starting absolutely pouring for about 45 minutes. We were all under a tent so we weren't getting rained on, but it rained so much, the yard started turning into one giant puddle! Jason was getting overtired, so we left soon after the rain stopped. On he way home, we hit another huge rainstorm. But, strangely enough, when we got home (only 20-25 miles away), it hadn't rained at all here!

Today, was back to see the Renegades. And yes, there was more rain - but only a few sprinkles, so no big deal. For some reason, they decided to put TJ's name on the scoreboard again today - so this time I got to see it!

Our fundraising continues to progress well. My dad passed along TJ's email to a bunch of other people and got some great responses. He's currently our team leader and very proud of it. Our total stands at $1165.55 and counting! Thanks to all who have donated to the cause! Tonite, I started to send out some letters to people whose email addresses I don't have. Unfortunately, I didn't get very far before we ran out of envelopes.

Sorry for the lack of pictures. We're having issues with the battery in the digital camera. Hopefully, we'll have that solved soon.

Monday, July 23, 2007

5s are wild!

TJ and I sat down this evening and did some Walk for PKD things together. One thing we took care of was counting up all of the money he had saved up to donate. He had been saving up 50 cents out of his allowance each week for this year's walk. And also, he decided to save up all of the nickel deposits we got back from returning soda cans and beer bottles and make that part of the donation as well. The grand total was $40.54. For some reason, TJ felt compelled to add a penny to this amount to make it "a more roundish number". So, he handed the cash over to me and I went to the website and used my credit card to donate $40.55 in support of TJ. When we checked out the team page a little later, the new total was $555.55! How strange! Honestly, we didn't contrive anything to get to that total - not even the extra penny that TJ felt like he needed to add in. That's what made it so cool!

Saturday, July 21, 2007

TJ's party

Today we had a party for TJ's 12th birthday, which is coming up next Friday. Had a fantastic time! The weather was absolutely perfect! I love getting the kids together with their cousins. We had six of them together this time - TJ, Brian, Jason, Brandon, Freya and Nolan - they all get along so well! TJ and Brandon, as the "senior members" of the Sayah grandchildren, seem to share a special bond, even though they are six years apart in age. Of course, we had our share of bumps and bruises along the way - but smiles and laughter always quickly returned. Jeanne (as usual) created a great feast for us - she really knows how to put together delicious salads! This morning, when I cut the grass, I came up with the idea of mowing a baseball diamond into our side yard (which TJ dubbed the "sports field" when me moved in). TJ got a real kick out of it. Of course, now he'll be wanting me to do it every week! :-)

The fundraising is off to a good start. It's been around two weeks now and our official tally is $515, which is pretty good considering we're just getting going. Jeanne and Mom haven't even gotten around to sending out their emails yet. I've written up a letter to send out to people who we don't have addresses for and hope to start getting that out over the next few days. TJ and I plan on heading off to the store tomorrow with all of the deposit cans and bottles and cashing them in so we can send that money along. TJ came up with that idea months back, so I told him since it was his idea, he got to count all of the money as his fundraising. You can follow our progress (or better yet, become part of our progress) at

Unfortunately, Jeanne's "old kidneys" have been bothering her a lot the past week or so. It's probably some kidney cysts bursting on her. It's been a long time since I've seen them bother her like this. I hope it passes soon - it so hard watching her in pain and not being able to do anything to make it better.

Tuesday, July 17, 2007

First post

Well, I've done it - I've created a blog for myself. I'm not sure yet what exactly I'll post or how often I'll post, or even how long I'll keep this going. But, I've started.

What's motivated me to start? Well, I'm heading up a team to walk in this year's Walk for PKD and I was surfing around the net the other night looking for some inspirational fundraising ideas and I came across a few PKD-related blogs that people had. And I thought - what a great way to get the word out about PKD!

PKD - that's Polycystic Kidney Disease if you didn't know it - is a disease which one out of every 500 people has. And yet, for some reason, few people seem to know about it. My wife, Jeanne, is one of those people that suffers from the disease, so over the past few years we've been getting more and more involved in the PKD Foundation's efforts to raise money and awareness for this disease. My family walked for the first time last year in the Walk for PKD and managed to raise more than $2000. We've signed up again this year and hope to raise even more.

But, more than raising money, I guess I feel compelled to get the word out about this disease. When my wife was diagnosed with PKD in 1992, I had never heard of it before. I thought it was some really rare disease. Then later, I come to learn that one in every 500 people has PKD!! So, how come noone seems to know about PKD? I guess it's because PKD doesn't have it's Jerry Lewis. PKD is 12 times more prevalent than muscular dystrophy - and everyone knows about MD thanks to Jerry's Labor Day Weekend Telethon.

So, I guess this blog is my small attempt to raise awareness of PKD. If you want to check out my Walk for PKD page, head over to