upcoming Hudson Valley Chapter events

Hudson Valley Chapter Meeting

Thursday, June 4, 2009
7:00 p.m.
Bedford Hills Community House
74 Main St, Bedford Hills, NY

Please join us for our next Chapter meeting. We are excited to have Chuck Newman from The Charles J. Newman Company as our guest speaker. Mr. Newman will be discussing "Insurance Issues for PKD Families" a topic that is very important for most of you.
There will be a brief Walk for PKD planning meeting following the presentation. Refreshments provided… New members are always welcome!Please contact Heidi Cambareri at 914-953-1163 or hudsonvalleychapter@pkdcure.org if you plan to attend.

Take Me Out to the Ballgame…

Join us at a Hudson Valley Renegades Game!

Sunday, July 26th at 5 p.m.
Tickets: $20/each, which includes a general admission ticket, baseball cap, hot dog, chips & a soda; AND $10 per ticket is donated to the PKD Foundation, Hudson Valley Chapter.

Tickets are subject to limited availability on a first come, first served basis. Purchase tickets online at: http://gadesgroups.com with the group password: hvpkd123.

For more information about the Renegades game, contact Bob Sayah at bobsayah@optonline.net or 845-444-0186.

new walk coordinator for 2009

Well, this is old news now, but just because I wasn't blogging, doesn't mean that things weren't happening!

Sam Friedlander has stepped up and taken over the job of walk coordinator for 2009. Sam has been involved with the walk planning for several years and over the last few years has done an admirable job with organizing all of the food. This is quite a task as we receive food donations from a large number of different organizations - some of it needs to stay hot, some needs to stay cold and by it's nature the large majority of it needs to be handled at the last minute. In the three years that our family has done the walk, we've always been well fed. And since we're usually the last ones back, if there was a problem with the amount of food, we'd be the ones to know!

The next walk planning meeting is scheduled for next week. Here's the announcement.

A planning meeting for the 2009 Hudson Valley Walk for PKD will be held on May 6, 2009 at 7:00 p.m. We need your help! Please join us at the meeting to learn about volunteer opportunities for the Walk and to share your ideas. You are welcome to attend the planning meeting even if you are unable to volunteer for the Walk. Here are the details about the meeting:

Planning Meeting
2009 Hudson Valley Walk for PKD
Date: Wednesday, May 6, 2009
Time: 7:00 p.m.
Location: Bedford Hills Community House
74 Main Street
Bedford Hills, NY 10507

Click Here For Directions

For further information, please contact:

Sam Friedlander
Walk Coordinator
hudsonvalleywalk@pkdcure.org

time to wake up this blog

Well, it's been quite a long time since I last posted. Probably, anyone who cared to read the blog, gave up on me a long time ago. But, I'm going to see if I can get my momentum back on this blogging anyway.

First order of business is to brag about a picture of TJ and Jason appearing on the front page of section B of Saturday's Poughkeepsie Journal. Here is an online version of the picture you can check out.

New Jersey Lighthouse Challenge

Last weekeend, out family decided to take a weekend trip to participate in the New Jersey Lighthouse Challenge. The challenge is to visit 13 different locations in two days, collecting a button at each location and a special cars once you visited all 13. In order to save a bunch of driving on Saturday morning, we drove down Friday night and stayed in a hotel in Thorofare, NJ, about five minutes from the first lighthouse we planned to visit. I was afraid the weekend would feel too "rushed" as we hurried to visit all of the sites. But, it turned out that we were able to go at our own pace and still see all of the sites.

We woke up early Saturday morning, grabbed some breakfast at the hotel and were on the road right about 8am. The first lighthouse we visited was Tinicum Lighthouse, located on the Delaware River in Paulsboro, NJ, just across the river from the Philadelphia Airport. This lighthouse was located right smack in the middle of the local community recreation park. The stairs on this one were very open. Brian didn't like being able to see down that well, so I had to carry him back down the stairs.





Next step was Finn's Point Lighthouse, a little further down the river.



And then had our biggest drive between lighthouses - about an an half to East Point Lighthouse. The kids were getting a little antsy in the car for this trip. This lighthouse had a nice view out across Delaware Bay.

At this point, we were getting hungry, so we found McDonald's for lunch before heading on to the Cape May lighthouse. We had been here back in June as part of our summer vacation - in fact it is the place we learned of the challenge in the first place. Now that we were on the coast, we walked over to the beach for a few minutes to check out the sand and the ocean.

Next up was one of the two museums on the route - the Cape May County Historical Museum. Housed here was one of the lenses that used to reside in the Cape May Lighthouse. The bright light you see in the picture below was generated by just a 60 watt light bulb.

From there, we went on to Hereford Inlet Lighthouse in North Wildwood.

And then to the Absecon Lighthouse in Atlantic City. Brian and Jason had gotten pretty worn out from all the climbing we had done so far, so they fell asleep in the car on the way. We had to wait a bit for them to wake up before we went into this one. This lighthouse is the tallest in New Jersey and the third tallest in the country.

Since the next lighthouse was one of the ones hosting a night climb, we decided to break for dinner before going on. Unfortunately, it took us quite a long time to find a place to break for dinner. We finally settled on a Stewart's drive in which was fun, but by then it was starting to get a little cool. After dinner, we went on Tucker's Island Lighthouse. Because it was dark, we didn't get to see very much. However, the bottom of the lighthouse contained a hands-on museum which the kids enjoyed a lot. We stayed until they kicked us out at 8PM.

The next task was to find a hotel for the night. Not really being familiar with where we were, we decided to just head in the direction of the next lighthouse and see what we could find. Turned out finding a place to sleep was an additional challenge we hadn't planned on. Hotels were hard to find - at least along the route we were taking. We finally stumbled upon the Barnegat Inn. While I was checking in, someone called asking for a room - and was told that I had just taken the last one!

The next morning, I ran out to Dunkin Donuts to bring some breakfast back before we headed out for the day. We got out of the hotel about 8am again and found we had about a 1/2 hour drive to our first step of the day, which was Barnegat Light Historical Museum. This small museum housed another lighthouse lens.

Then, we were off to the Barnegat Lighthouse itself. Unfortunately, the winds had picked up quite a bit overnight, so they had closed the lighthouse, preventing anyone from climbing up.

Next stop was about an hour away - the Sea Girt Lighthouse in Sea Girt, NJ.

After our visit at the lighthouse and a short visit at the nearby beach, it was time to find something to eat. We found a nice local restaurant, got ourselves a table, and learned that even though it was about noontime, they were still serving breakfast. So, we all indulged in a second breakfast.

When we were done eating, we headed next to Twin Lights in Highlands, NJ. This was the consensus favorite lighthouse of the trip. This lighthouse was high up on the hillside and had two light towers instead of one. Of course, we had to climb both towers.

Last stop was Sandy Hook Lighthouse. Unlike most of the lighthouses, where you could climb up and down as you pleased, this lighthouse had guided tours - eight people at a time. So, there was a line to wait on to go up the lighthouse. Also, they had a height limit of 48 inches, so that meant that Brian and Jason would not be able to go up. So, Jeanne took Brian and Jason to a nearby beach while TJ and I waited the hour to go up the lighthouse. However, it turned out to be well worth the wait. By that time of the day, the sky was very clear, so we were able to get great views of JFK airport, Coney Island, the Verrazano Bridge and the Manhattan skyline.

From there it was on to dinner at the Marina Diner - where they served us a feast - and then about a two hour trip home. We were all plenty exhausted by the time we got home, but we all had a great time!

thank God I have "gold-plated" insurance

Quote from John McCain in tonite's debate: "Now, 95 percent of the people in America will receive more money under my plan because they will receive not only their present benefits, which may be taxed, which will be taxed, but then you add $5,000 onto it, except for those people who have the gold-plated Cadillac insurance policies that have to do with cosmetic surgery and transplants and all of those kinds of things"

Ok, so depending on your definition of cosmetic surgery, I can see where that might be considered a "luxury item" in a health insurance plan. But lumping in transplants with that? Huh?

It's OK, John - you didn't lose my vote. I wasn't going to vote for you anyway....

Walk Day pictures

There are now a bunch of pictures from the Hudson Valley walk posted off the Hudson Valley Walk Page. You can check them out here.

PKD Foundation Webinar next Tuesday

Join Us for a Free Webinar with PKD Expert Dr. Ronald Perrone!

Register Today!

What: Free "PKD Basics" webinar presented by Dr. Ronald Perrone of Tufts Medical Center in Boston

When: 8 p.m. (ET), Tuesday, October 14

Where: From the comfort of your home or office computer

Who: Anyone who has been recently diagnosed with PKD ... family members of those affected ... all those interested in learning more about what causes PKD, how it affects the body and what you can expect through the course of this disease

How: Click here to register! It's quick ... it's easy ... and it's free! Sign up now!

The webinar is the first of a series of free webinars and other educational services planned as part of the PKD Foundation's new patient education program.

Learn more and view a list of upcoming webinar topics.