opposites attract

Well, I got my official letter in the mail regarding my compatability with Jeanne for a transplant. Here's the results:

Blood type:

AB

Antigen matching:

You and your recipient have a 0 out of 6 match

Crossmatch:

You and your recipient have a positive crossmatch

In summary, there is nobody on the planet who is a less suitable match with Jeanne for a kidney transplant than I am.

As I sit and reflect on this, though, I'm thinking this may actually be good news. I knew going in that I couldn't donate a kidney to Jeanne because of our blood type mismatch. If we were compatable with respect to antigens and crossmatch, then maybe the pair of people we would match up well with would also match up well with each other, and therefore the other pair would have no need to get involved in any sort of kidney swap.

In any case, the next step for me is to get back in touch with the NYP Weill-Cornell transplant team and start the process of getting myself into the Donor Swap program.

an open letter

Dear friends, family, neighbors, kindhearted strangers,

My wife Jeanne was diagnosed with Autosominal Dominant Polycystic Kidney Disease in 1992, soon after we were married. Polycystic Kidney Disease (PKD) is a genetic disorder which affects an estimated 1 in 500 people worldwide. The presence of the PKD gene causes cysts to grow on the kidneys, which over time reduce the kidney’s ability to remove waste and toxins from the body. There is no cure, and currently no accepted treatments to slow the progression of the disease. Kidney failure occurs in approximately 50% of patients who have PKD.

Once kidney failure occurs, the only treatment options are dialysis and transplant. Dialysis is a process whereby the patient is hooked up to what is essentially an artificial kidney machine. Typically the process lasts for three hours and is performed three times a week, most often in a special dialysis center. Transplantation involves taking a kidney from another person, either deceased or living, and placing it into the patient’s body. For Jeanne, her kidney failure occurred fairly early in life – when she was only 31 years old. Jeanne was fortunate enough to receive a transplanted kidney, donated to her by her Aunt Susie in May of 1998.

Jeanne’s kidney transplant was a life-changing experience for her. It vastly improved her health and literally gave her new life, despite the many medications she needs to take to allow her body to accept the new kidney as her own. That’s the good news. The bad news is that a kidney transplant is not a cure for kidney disease – only a treatment. Transplanted kidneys can only last so long in a foreign body. In fact, the very drugs that are required to be taken to allow the body to prevent the new kidney from being rejected have an adverse affect on the kidney itself.

So, here we are 11 ½ years after the transplant, and the time has come where Jeanne’s “extra kidney” is no longer able to do its job very well. Jeanne’s creatinine levels (which are used to measure the effectiveness of the kidneys) are rising and it is time to face the reality of approaching kidney failure yet again. Jeanne has gone through the initial process of transplant evaluation and, as of September 30th, she has been placed on the waiting list for a deceased donor kidney. The amount of time one has to wait for a deceased donor kidney is highly variable, as it takes into account many factors, but the reality is that there are far more people in need of kidneys than there are kidneys available for those people. Given that Jeanne is blood type O, we are being told that the expected wait time to receive a deceased donor kidney is likely around seven years.

Living kidney donation is another option, as the large majority of us are able to live full healthy lives with only a single kidney, despite the fact that we have two in our bodies. Jeanne’s first kidney transplant was a living kidney donation from her Aunt Susie. In a living kidney donation, a person agrees to donate one of their two kidneys by having it surgically removed and transplanted into the recipient. In general, living kidney donations have much better success rates than deceased donor kidneys.

The three main requirements for being able to perform a living donor transplant are blood type compatibility, antigen matching and crossmatch compatibility. Blood type compatibility follows the same rules as for blood donation: A can donate to A or AB; B can donate to B or AB; O can donate to everyone; and everyone can donate to AB. Antigens are six markers on cells in our bodies that help our immune system identify foreign cells entering our bodies. The more of these antigens which match between the donor and recipient, the more likely there will be a good outcome of the transplant. And, finally, a blood test is done whereby the blood of the donor and recipient are mixed together to see if the recipients blood reacts against the donors blood. If it does, this is considered a positive crossmatch, and this condition decreases the likelihood of a successful transplant.

In the hopes that we can avoid the expected seven year wait, I have begun the process of attempting to see if I can become a living kidney donor. Unfortunately, since Jeanne is blood type O (the universal donor) and I am blood type AB (the universal receiver), I will not be able to donate a kidney directly to Jeanne. However, there is a small possibility of us being able to participate in a donor swap, whereby we could be matched up with an O-type donor and an AB-type recipient who are otherwise incompatible due to poor antigen matching or a positive crossmatch reaction. While the chances of us being successfully paired up in this manner are somewhat minimal, they are certainly better than if I try than if I do not.

Deciding to donate a kidney is a major life decision, so I could never ask someone directly if they would be willing to join me in my attempt to provide Jeanne a living donor kidney. It simply would not be appropriate in my mind to put someone on the spot like that. There is certainly pain involved, various emotional issues to sort through, potential financial impacts, and some small risks associated with the surgery itself. It is not a decision to make hastily, nor one to be made because you feel pressured to do so. However, given Jeanne’s health and the reality that even if a match is eventually found for my kidney, it could take quite some time before that happens, I feel it my duty to at least put some information out there which would enable someone who might be willing to step forward to do so.

If, after careful reflection, you do feel that you may wish to become a potential kidney donor, you may contact the Rogosin Institute Transplantation Center at (212) 517-3099 and inform them that the patient you are inquiring about is Jeanne Tobin. Jeanne’s clinical transplant coordinator is Warren Phillips. You may speak to him or to another member of the transplantation staff. They will be happy to answer any questions you have about kidney donation and will respect your privacy along the way as well. If you wish to do some research on your own, you may find the information at http://www.rogosin.org/treatment-transplantation.php to be helpful.

Thanks,

Bob Sayah

a soggy Halloween

Happy Halloween, everybody! It was another fun night of trick-or-treating for the Sayah boys (all four of us :-)). Jason went as Mario from the Nintendo games. As usual, Jeanne did a great job of pulling together the costume.



Brian and I went as Elmer and Boris the Dragon from the book My Father's Dragon. Jeanne got off easy here, as these costumes were still sitting in the crawlspace from 8 or so years ago, when TJ and I went out in these costumes. I just had to make some new wings for the dragon this afternoon.



I don't think these books as very widely known, as noone could name who Brian and I were. But, if you have kids in early grammer school, I highly recommend you find these books for them. And if they really get into them they way all of my kids have, we've got some costumes you can borrow next year!

TJ wasn't going to go out trick-or-treating this year, but at the last minute he changed his mind and joined us. He pulled together a costume using a mask and some props from his school play last year, where he played the role of the Executioner.



Here's one more picture that was just too cute to not post.



After about forty-five minutes of trick-or-treating in the light rain, it started to fall more heavily, and we all started to get pretty soggy. My wings collapsed and I could feel my tail starting to get really heavy from all of the puddles it was getting dragged through. Brian's backpack (which was a cereal box covered with brown paper) got wet and then the shoulder straps fell off. So, we headed back home (without too much complaining) and spent the rest of the night greeting the trick-or-treaters coming to our door. Seems like the rain led to a lighter turnout than usual. Time to go turn off the lights and call it a night!

first visit to the Walkway over the Hudson

Today, I got my first chance to visit the Walkway over the Hudson which opened up about a month ago. For those that don't know, the Walkway over the Hudson is a new state park where they converted a former railway bridge into a path across the Hudson River from Poughkeepsie to Highland. You can learn more about this wonderful new place from their website.

Jason, Brian and I went together to check out the walkway while Jeanne stayed home to get started on Halloween costumes and TJ was off at play practice. I had heard that there would be a free shuttle bus from the nearby train station, so I decided to go there rather than try to find parking at the site, as I was certain the place would be crowded on such a beautiful day. Turns out that was the right plan. The lot at the park was full and the guy across the street was charging $5 to park in his lot.

Jason and Brian enjoyed the bus ride over.

Once the bus dropped us off at the park, we had to walk down a short path to get to the bridge.

With the fall colors, the views were spectacular.

Here is Route 9 from a new perspective

Finally, out over the Hudson River!

Looking south at the Mid-Hudson bridge

At this point on the bridge, we ran into the Marist women's basketball team. One of the girls was nice enough to offer to take pictures of the three of us, so I get to upload a couple of pictures that have me in it for a change.

Well, since Brian and Jason were getting tired of walking, and we had to pick up TJ soon anyway, that's as far across as we got today. So, we turned around and headed back.

As we reached the end of the path, we saw the bus pulling away, so we had to hang out and wait for a while. Brian and Jason had fun passing the time.

But, then the bus finally showed up to bring us back to the train station.

We ended up being a little late to pick up TJ, but the three of us thought it was worth it. And since TJ got to go over the bridge earlier in the week with some classmates (and none of us), he couldn't complain too much. With November just around the corner, I imagine that's the only chance we'll get to visit this year. When spring comes, we'll have to plan a nice day of it and go all the way across - maybe even pack a picnic lunch to eat over on the other side.

TJ's Confirmation

TJ received the sacrament of Confirmation last evening at our parish church of St. Martin de Porres. TJ chose to confirm under his baptismal name of Thomas in honor of Saint Thomas Aquinas, the patron saint of scholars. TJ received a little special attention from the bishop due to the fact that he decided to write his letter to the bishop in both English and Latin.

Here's a picture of TJ and his Nana, whom he chose to be his sponsor.

And here's a picture of the family with Bishop Lagonegro.

I'm very proud of the fine young man my son is growing into.

PKD publicity on CBS Early Show - tomorrow!

Received the following email and thought I would pass it along on here in case this is able to reach someone not already on the mailing list. This is tomorrow! Sounds like a great chance for some more publicity for PKD. Hope they are able to draw a good crowd, but midtown-Manhattan at 7:15am on a weekday with three kids to get off to school just isn't realistic for us. If nothing else, though, set your VCRs and DVRs.

We have just officially booked the CBS Early Show for this coming Monday morning, October 19, 2009. In order to maximize our media attention, we need 20 people to come down to CBS Plaza and fill our shot - we have guaranteed air time. Wear your teal Walk for PKD t-shirt or we'll provide one. We also encourage you to make signs that include the website…www.pkdcure.org. Please e-mail us as soon as possible if you are interested in attending! tristatewalk@pkdcure.org Bring family, friends, colleagues to help guarantee us as much air time as possible! Or pass this email on to anyone else who may be interested. Please let us know if you have any questions. Hope to see you Monday morning! Meeting details are as follows: Arrive by: 7:15 a.m and leave by 8:50. Report to 59th St and 5th Ave, the southeast corner of Central Park. It's in the same building as FAO Schwartz. The camera people and crews, and barricades are out early so you can't miss it. Everyone should dress warm but the Apple Store will allow us to stay in their store for warmth. If anyone would like a tour of the inside of the studios at 9 a.m, CBS will probably do that for us

pictures from walk day

Finally got some pictures from the walk. Thanks, Dad!

Here's Sam, this year's walk coordinator, along with his bodyguards. Positions of power such as his require extra attention to security.



Here's Jeanne taking care of the Hudson Valley Chapter information table.



Jason hanging with a stormtrooper.



Brian and Pop-Pop waiting for their chance to say hi to the stormtrooper. There's Kenny the Kidney in the background.



A picture from the walk route. Notice how everyone is in front of us, as usual.



One of my favorite touches is the signs they put up along the walk route. Here's one congratulating TJ for his fundraising efforts the previous year.

Back at the pavilion, it's time for some eating and socializing!

Brian, don't fill up on soda!

TJ once again received the award for second place youth fundraiser. He's not looking as youthful as he used to, though! In the foreground, Luke raises up his first place trophy.

Thanks again to everyone who helped make this another successful year for Team Teddy Bear and the entire Hudson Valley Walk fo PKD!

Walk for PKD 2009

Yesterday was the 2009 Hudson Valley Walk for PKD. As usual, the day was hectic, fun, emotional and exhilirating all at the same time! The alarm went off at 5:45 and thankfully, we had all but Brian up out of bed on their own before 6:30. A quick breakfast and we were on the road a little after 7:15, getting us to Bedford Hills right on schedule at 8:15.

Jeanne and I started out by setting up the Hudson Valley Chapter information table while TJ pitched in and help muscle some tables to their proper spots. A small football that our walk team received in our prize basket served as more than enough entertainment for Brian and Jason, who were very happy to have Luke join in the fun with them.

After a while working the chapter table, Heidi asked me to work at the registration table, helping people fill out forms to submit their donations at the walk and pointing people to the proper places to check in. I helped here last year, and think I'm getting quite adept at recognizing the "I'm not sure where the heck I'm supposed to go" look on people's faces. I like this job, as it is a good chance to meet folks and hear some of their stories about why the walk. Once person was down from Rhode Island and was wearing a T-shirt from a PKD Comedy and Music festival. I asked her about it and learned that it taken place every August for the last three years. This sounds like it might be a fun weekend trip for next summer. I'll have to google it up and find out exactly when and where it takes place.

A little after 10, the opening ceremonies were run by Sam and then the walk was off. TJ and his ham radio were at the front of the walk. Jeanne had a bit of a headache and wasn't feeling up to walking, so she decided to stay behind at the pavilion. Since I was helping with some last minute registrations, I got a late start and had to jog the first 1/4 mile or so to catch up with the rest of the family. For a while, we were keeping pace with the rest of the group, but then Brian and Jason started to tire, and we eventually ended up the same place we do every year - the back of the pack.

The good news is that by walking at the back of the pack, I was able to meet Bill Brazell (aka Kenny the Kidney), who is a member of the PKD Foundation's Board of Trustees, and had the pleasure of chatting with him for a while as we walked the route. At one point, when I began to tell the story of how PKD is affecting our family, Bill suddenly interrupted: "oh - are you the Bob from Team Teddy Bear?" Apparantly, he had just been reading through this blog the other night and recognized my story. Bill's a wonderful guy, so if you ever see a seven foot tall kidney walking down the street, don't be afraid to walk up and introduce yourself.

Once we got back, it was time for the post-walk festivities. TJ once again received the second place youth fundraiser award for raising over $1000! Great job, TJ! And, after four years of trying, I finally won some of the famous Grossman family maple syrup in the raffle! Can't wait for our next pancake breakfast.

After the walk, it was back to our house for a little post-walk eating and relaxation. Since Friday was Mom's birthday, Jeanne had ordered a cake to celebrate the occasion - turned out the cake was her 5th birtday cake in as many days. Better spend some extra time on that treadmill this week, Mom.

Pictures? Well, those will need to come later. You see, I have this bad habit of leaving the camera behind. I think it's a subconscious response to my other bad habit of dropping and breaking cameras. But, Dad has some pictures and I'll post some of them as soon as they get passed along.

Thanks again to all of those who have supported us this year. I've lost track of our official total at this point, but I know it is now over $4000!

two more days until the walk

Two more days until our chapter's Walk for PKD. Our walk has now raised over $44,000. I believe we are poised to actually beat last year's total - which I find amazing considering the hit the economy has taken over the last 12 months. There seem to be quite a number of new walkers and walk teams this year who are getting involved and helping to raise more funds, and hopefully more awareness as well. I'm looking forward to this walk being the best one yet.

Our team managed to take the prize for most walkers with $50 or more raised - and our grand total is now $3645. I couldn't ask for a better team, and, even after four years of doing this, am overwhelmed by the amount of support I receive from friends and family in our fundraising efforts! Thank you all!

Here's the latest update from Heidi:


Hello Team Captains!

The Walk for PKD is almost here! We are thrilled to have so many walk teams participating in the Hudson Valley Walk this year- and some amazing fundraisers. We have already raised enough money to fund a year of a research fellowship- we really are doing something to help end PKD!

Congratulations to our most recent "Team Tuesday" prizewinners... Team Teddy Bear will receive a picnic fun pack on walk day to celebrate the fact that all 13 of their walkers have already raised $50 or more. Great job! In addition, Benny's Brigade, Dream Team, Hooked on Hope, Luke's Team, Team Teddy Bear, and 3 Peas in a Pod will have snack basket waiting for them at the walk in celebration of the fact that they had all raised over $2000 by last night.

We are proud of all our walkers and all our teams- you are playing a huge role in our quest to find a treatment or cure for PKD.

I look forward to seeing you on Saturday. After registration I'll be at the Hudson Valley Chapter Info table, so feel free to come on by and say hello- and find out what our plans are for the rest of the year!

Oh, and don't forget, we will be holding a Chinese style raffle and a silent auction as well. We have lots of great raffle prizes and our silent auction items include a 37" LCD TV, a Blu-Ray DVD player, a Nikon digital camera, and a Play Station 3 all donated by Best Buy... plus even more!

See you at the walk!

one more week until the walk

The 2009 Walk for PKD is a week from today. Thanks to our friends and family (and even friends of family), Team Teddy Bear has raised nearly $3500! The overall total for the Hudson Valley Walk is over $39,000, which I think is a little ahead of the usual pre-walk total. It appears that there are a number of new teams signed up which might mean we are headed for a record turnout. It's very encouraging to see such continued support despite everything that the economy has gone through over the past year.

News from Heidi on Team Tuesday:

" Congratulations Teams!

Sixth Street, 3 Peas in a Pod, The Cure Crusaders, Team Teddy Bear, Hooked on Hope, Benny's Brigade, and Luke's Team will all have team tables reserved at the walk site. Feel free to bring things to mark your spot and make it a fun place for your team to congregate! Other teams will still have an opportunity to have a table to sit at- but the remaining tables are open to anyone.

I am happy to say that we had a 3 way tie for teams who had the most walkers raising $50 or more- Team Teddy Bear, Hooked on Hope, and Luke's Team were all tied with 8 team members raising $50 or more. Great problem to have, but I only have one "Picnic Fun Pack"- so we'll extend that challenge to next Tuesday and see if one team pulls ahead and takes the lead!

Have a great week- and thanks for all your efforts in recruiting walkers and fundraising. You are taking steps to help cure PKD and 12.5 million people appreciate it!"

Last minute donations are always welcome. Just head to http://www.pkdcure.org/helpbobfightpkd to make a donation.

Team Table Tuesday

Here's the next Team Tuesday challenge from Heidi:

Congratulations to Janet Ferrara and the Cure Crusaders - winners of our Sept. 8th drawing for a Walk for PKD gift bag! As of 5pm on Tuesday, the Cure Crusaders had registered 10 walkers and raised a total of $180.

Now its time to gear up for the next challenge- Team Table Tuesday!

Any team that registers 10 or more walkers online by 5pm Tuesday, Sept. 15th will have a Team Table reserved for them at the Walk start/finish line! This guarantees that you'll have a place to gather before the walk and to sit, relax, and enjoy lunch after the walk. You are also welcome to decorate your table and make it festive if you like! But wait, there's more! It's great to get people to the walk, but remember this is also a fundraiser. The team with the most walkers who have raised $50 or more by 5pm Tuesday will also have a special suprise waiting for them on their table on walk day. It's EASY to raise $50... just ask 2 relatives for $25 or 5 friends for $10. Even kids can do it! If you hate asking others... you can also always donate yourself. :)

Good luck with your recruiting and fundraising this week!

Please pass this message along to your team members so they can help you.

Heidi Cambareri
Volunteer Chapter Coordinator
PKD Foundation - Hudson Valley Chapter
www.pkdcure.org

THE HUDSON VALLEY WALK FOR PKD IS ON SEPTEMBER 26TH! REGISTER OR MAKE A DONATION TODAY!

Facebook Vote for a Cause

In addition to the Walk for PKD coming up (in some places the walk is this weekend), here's another way to support the PKD Foundation through Facebook. Intel is giving one non-profit organization a chance to "win up to $50,000 in co-branded advertising". Could be just the kind of exposure the PKD Foundation needs to get this disease on everyone's radar screens. The PKD Foundation is currently one of the 16 finalists and could use every vote it can get. If you are on Facebook and want to help out, it's as simple as:

1) Go to http://apps.facebook.com/voteforacause/

2) Click on the PKD Foundation button

3) Click on "Record your Vote!"

4) Repeat every day until the PKD Foundation emerges as the winner!

first day of kindergarten

Today was the first full day of kindergarten for Jason and Brian. Here's some pictures just before getting on the bus for the first time!



Jason and Brian getting ready to go

Jason waiting for the bus

Brian waiting for the bus

The bus!!!!

Jason on the bus.

Brian on the bus

Some first day trends we hope don't continue:

• Brian was escorted inside at recess by the principal (ok, so it was just to bring him to the nurse's office after a fall - or at least that is Brian's story and he's sticking to it)
  
• Jeanne, free at last to go shopping without the little guys, went on a spending spree at the local stores (ok, so it was mostly to buy TJ clothes for school)
  

First day trend we hope DOES continue:

• The boys fell asleep very quickly tonite!
  

Team Tuesday #1

Heidi, our chapter coordinator is running "Team Tuesdays" in conjunction with this year's PKD Walk. The first one is this coming Tuesday, the 8th. Here's the details:

It is time for Team Tuesdays! For the next 3 Tuesdays, your team can take part in some special challenges- just for walk teams! This Tuesday, September 8th, is Full Team Tuesday. All teams are encouraged to register at least 4 walkers on line by Sept. 8th. If you do, you will be entered into a drawing to win a Walk for PKD gift bag including things like a duffel bag, bracelets, water bottles, and a bunch of other fun treats. If you have a full walk team, great work! If you don't have 4 people on your team yet, don't miss your chance to win... now is the time to ask some friends or family members to join you.

Team Teddy Bear currently has five registered team members (six counting Alexis) - and hopefully we'll have several more registering soon!

Now that the website is functional again, I can report our official fundraising total is $1839.55. Thanks to everyone for supporting us!

Thanks

Thank you to everyone who has supported Team Teddy Bear so far this year. The walk web site seems to be having some issues this evening, so I'm going by memory here, but my unofficial team total has us a little over $1600. I was hoping to catch up on thank you notes tonite, but with the site having issues, I guess I'll have to do that another time.

Thanks to Brian and his team at Dutchess Building Specialists for supporting our cause again this year. If you live in Dutchess County and are considering any remodeling in your home, I highly recommend giving Brian a call. He and his team are true professionals who will bend over backwards to minimize the disrpution involved in any home remodeling project.

Team Teddy Bear goes cheese-head

My wonderful sister-in-law Alexis will be virtually walking with us again this year. Since she'll be out of town that weekend, she'll actually be walking in Green Bay this year instead of Chicago. Hopefully, the post-walk lunch includes beer and brats!

Check out her walk page at: http://www.pkdcure.org/alexis.t

Thanks, Alexis!

initial tally for 2009

Finally got some time this evening to catch up on walk fundraising activities. Thanks to everyone who has donated to Team Teddy Bear's total of $1404 so far in 2009! The current tally for the Hudson Valley Walk is nearly $16,000. The walk takes place one month from yesterday.

200,000 miles!

Today, on the way home from the Renegades game, our Toyota Sienna minivan passed 200,000 miles. 11 years and still going strong!

emails sent

I finally got a chance to send out some emails to friends and family asking them to support me and Team Teddy Bear in the 2009 Walk for PKD. I got off to a much earlier start last year - I remember TJ and I working together on this over July 4th weekend.

If you are visiting the blog and want to check out our progress, you can follow along at http://www.pkdcure.org/teamteddybear. My own page is http://www.pkdcure.org/helpbobfightpkd. And the Hudson Valley Walk page is at http://www.pkdcure.org/hudsonvalleywalk. And, while you are there visiting, please consider donating to help fund essential PKD research.

a start

Well, Team Teddy Bear's fundraising is officially kicked off. Every year, TJ saves up all of our nickel deposit cans and bottles and we use the money we get from that as part of our fundraising. Yesterday, we finally returned the large pile which was sitting in the corner of the garage. The tally was 191 bottles, which came to $9.55 cents.

Other than that, I am quite behind in my fundraising process this year. The people who run the walk changed the software which they use, so I lost the address book I had created last year and I need to enter a new one into the system before I cna start sending out any emails. So, I am now scrambling through various places trying to resurrect an email address book so I can contact folks.

2009 Walk coming soon!

Well, obviously my attempt to get things moving on this blog again earlier this year proved to be a false start. But, hopefully, with the Walk for PKD coming up soon, I can use that as an opportunity to get myself back into the groove.

Yes, the 2009 Walk for PKD is already less than two months away. It will be held on Saturday, September 26th in Bedford Hills Memorial Park - the same location it has been held as long as we've been participating. This will be our family's fourth year particpating.

I've updated the blog here so that everything links to our new web pages for this year's walk. So, please take a moment to check out our team's web pages and consider making a donation to our team. Or, better yet, join us on team Teddy Bear either locally, or as Alexis did last year, in another walk closer to you.

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.