my first Hudson Valley PKD Chapter meeting

I attended my first PKD Foundation Hudson Valley Chapter meeting on Tuesday night, making the 45-mile trek down to Bedford Hills. It was a very interesting experience. The twelve or so other folks who were there made me feel very welcome, and were eager to help me find a role in the chapter.
The meeting started out with business first. Here's some of what is going on:

• The chapter is holding a bunch of book wrap fundraisers down in White Plains and Mt. Kisco. Michelle seems to be leading the charge for that.
• The current updated walk fundraising total for the chapter is $57,611.75. A pending grant of $3700 from Best Buy (37 walkers - $100 per walker!) will put the total over $60000!
• Next year's walk date is set for Saturday, September 20th. Sandy will be co-coordinating with Heidi next year.
• Diane introduced the idea of raising money through the recycling of ink cartridges and cell phones through www.fundingfactory.com
• On March 15th, the chapter will be hosting an educational seminar at the NYU School of Medicine.

Next, the meeting was turned over to Taryn, who is the Northeast Region volunteer manager, based out of Washington D.C. She gave an update on foundation happenings, focusing on Advocacy. Here's some of the highlights:

• Congress is considering passage of two bills of importance to PKD patients: the Genetic Information Non-Discrimination Act and the Comprehensive Immunosuppressive Drug Coverage for Transplant Patients Act. You can help by contacting your representatives and asking for their support. For more information, check out the PKD Foundation Web Site.
• The PKD Foundation is holding an Advocacy event in Washington on March 3 and 4, where people will have a chance to lobby congress about issues important to PKD Patients, including research funding.
• The Foundation is changing from a membership program to a partnership program. The main change is that all donations from a person to the Foundation will be counted towards one's partnership level, regardless of how those donations are made. Previously, people who were donating only through the walk for PKD were not being counted as members, and were therefore not receiving mailings such as the PKD Progress magazine.
• The PKD Foundation will be focusing on increasing its presence on the internet - chat rooms, message boards and the like - and also looking to increase its advertising on the internet. An online marketing manager was recently hired to lead this effort.
• The 2008 National Convention on PKD will be held in Dallas from June 20-22.
• The PKD Foundation will be publishing a cookbook next year - full of kidney-friendly recipes.
• Nationally, the PKD walk total money raised is nearing $3 million, up from $2.1 million in 2006, $1 million in 2004 and $214,000 the first year in 2001.

There was a lot of good discussion surrounding all of the topics. I think the chapter will be looking to me to be the "northern connection" for the chapter activites. For example, Diane has asked me to try to figure out what the right outlets are up here (newspapers, radio, magazines and other publications) for spreading the news about the chapter happenings, especially the walk. Thankfully, I can lean on Jeanne's Junior League experience to help me figure that out.

I talked to Heidi afterwards to get an idea of how often the chapter meetings occurred. It appears they are rather sparse in the winter and then pick up around April and through the summertime as the walk appoaches. This should be good for me as I try to get more involved, as things tend to be a lot more hectic during the school year than the summertime.

Walk for PKD Final Totals

From the Hudson Valley Chapter page on the PKD Foundation website:

The 2007 Hudson Valley Walk had a wonderful year. We had 237 registered walkers and together we were able to raise $57,526! Thank you to everyone who helped in our fundraising efforts and we hope to see you all again next year.

I think that total is down a little bit from last year. But, I believe last year's fundraising was dominated by a couple of people who raised huge amounts of money. This year, there were a lot more people contributing solidly to the total - which means despite a slight decrease in the amount of money raised, there is a more solid base to build from for the future.

Happy Birthday Cindy!

In honor of your birthday, a memory from childhood:



After all of these years, you're still my favorite sister! Hope you have a great day!

Happy Thanksgiving

... a couple of days late.

Things I am thankful for:

Jeanne - for more that two decades of love, friendship, companionship and support. There is noone I'd rather go through life with.

My parents - for their guidance and example, and for always being there in our times of need.

My kids - for providing the perspective of a child to my life and for calling me "Dad"

Susie - for her generous kidney donation - a gift that can never be equaled

Beth and Kateri - for also being willing to donate

my job - as it gives me the opportunity to provide a good life to my family and the medical insurance that we'd probably be broke without.

the PKD Foundation - for leading the way in support for those dealing with PKD

my brothers and sister - it's rare that four siblings get along as well as we do.

holidays - for giving us an excuse to step aside from our busy lives and spend time with those we love

friends and neighbors - who have provided us with all sorts of help over the years

kidney transplants - without the kidney transplant, it's hard to imagine what my life would be today.

doctors - we've been blessed to have many good ones over the years

a good night's sleep - the rare times I get one, it's amazing how refreshing it can be!

another picture

About a month ago, I posted a link to a picture of a polycystic kidney. The other day, I found an even more dramatic picture. First of all, understand that a normal kidney could just about fit in the palm of your hand. Now, take a look at this kidney and notice the size of the kidneys as compared to the doctor's hands. Ouch!

just checking in

Been a while since I've posted. In fact, this appears to be my first post of the month, and the month's more than half over! And this apparantly is National Blog Posting Month, too. Guess I'm not doing my part. Oh, well.

Brian and Jason were kind enough to share the colds they had for Halloween with the rest of the family, so we all seemed to be struggling through the beginning of November. Jeanne even had to reschedule her nephrologist appointment to later this month. Other than that, things have been pretty normal around here. Just spending time raking leaves, doing laundry and other every day activities.

I've been adding to the list of PKD-related blogs over on the right side of the page. I invite you to take some time to read through them as they share their experiences living with PKD.