Thursday, November 29, 2007

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
  • 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.

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