Sunday, March 30, 2008

CTY Odyssey Day at UConn

TJ recently was accepted into the Center for Talented Youth program run by Johns Hopkins University and yesterday he got to attend his first event, which was an Odyssey Series program being held at the University of Connecticut and sponsored by the university's College of Liberal Arts and Sciences. It was a very impressive program. About 100 students in grades 7-10 attended. There were some full group sessions and then three small (10-20 student) sessions, where each student got to choose from one of about eight difference choices. TJ's choices were to attend the following sessions:

1) A rule to trick Arithemetic where the students all learned about modular arithmetic, how 7 +27 can equal 10, and how one can use modular arithmetic to predict missing numbers off of UPC labels.

2) Chemistry is Fun where the students tried out various chemistry experiments and then enjoyed "instant ice crean" made by the professor from cream, half and half and liquid nitrogen.

and his favorite:

3) Podcasting, What Why and How where the students were introduced to podcasting and got to help make their own podcast which you can listen to here.

For me, I found one of the keynote speeches very intruiging. It was a talk by Dr. Rachel O'Neill entitled Unlocking the Secrets of the Human Genome. She dicussed the emerging field of genomics, which is taking the results of the recent work to map the human genome and using that information to better understand the workings of the human body. She decribed one recent case from 2005 where researchers were able to create a modified version of the HIV virus which they were able to use to attack and destroy cancerous melanoma cells. While I certainly don't have the background to understand the science behind this, I find it very exciting that there seems to be so much progress in this field. Hopefully, this field of science can lead to some new treatments and potentially even cures for genetic diseases such as Polycystic Kidney Disease.

Saturday, March 22, 2008

Upcoming PKD Foundation, Hudson Valley Chapter Events

Wednesday, March 26 - PKD Support Meeting
Sandy and Wayne Grossman’s House
Bedford Hills, NY
7:30 p.m. to 9:00 p.m.
Please call them at 914-666-4073 or e-mail to let them know you plan to attend and for directions.

Thursday, April 10 - Walk for PKD Planning Meeting
Bedford Hills Community House
74 Main Street, Bedford Hills, NY
7:30 p.m. to 9:00 p.m.

Tuesday, April 15 - Walk for PKD Planning Conference Call
Focus on Sponsorships and Publicity
8:00 p.m. to 9:00 p.m.
Contact for call-in information.

Wednesday, May 7 - Walk for PKD Planning Meeting
Bedford Hills Community House
74 Main Street, Bedford Hills, NY
7:30 p.m. to 9:00 p.m.

All are welcome at the Support Meeting or as we begin planning for the 2008 Walk for PKD. Join us at a Walk Meeting to learn about what goes into making the Walk a success and how you can get involved! Can’t make it to the meeting? We are holding the Planning Conference Call just for you! This is a way to help anyone in the Hudson Valley get involved! For information on the Walk for PKD or Walk Planning Meetings and Calls, please contact Hudson Valley Chapter Coordinator, Heidi Cambareri, at

Thursday, March 20, 2008

Spring Break Vacation 2008 Day 6

If I were thinking ahead, I probably would have entered these vacation entries in opposite order, so that they would come out with "Day 1" at the top instead of at the bottom. Oh well.....

March 18, 2008

Today we went to Jamestown, VA - the first English settlement (that survived) in America. Bob, Brian, Jason and TJ watched a movie about Jamestown while I read about the people of the early 1600s. We strolled through the park and listened to part of a talk given by "Mr. Johnson", a free Negro living in the late 1600s. Mr. Johnson owned some 250 acres because he brought over 5 indentured servants from England, getting 50 acres for each servant. We were unable to complete the talk and walk because our natives were getting restless.

We walked around the fort area and in the archaearium. On the way back to the visitor center, Jason and Mommy saw 4 turtles in the swamp. Brian and TJ ran on ahead.

We drove along the Colonial Parkway to Yorktown. As the park ranger's say, we were in the 2 parks that began and ended English domination in America.

At Yorktown, we listened to a park ranger give an account of the battle of Yorktown - from excerpts of letters and journals from people whi were at the battle. This one hour talk was the favorite of Bob, Jeanne and TJ. Bob unfortunately had to leave before it was finished because Brian and Jason were cold and tired (for the first half of the talk, we were able to sit on some benches with Brian and Jason asleep in our laps).

According to the ranger, the victory was a French victory - given to the Americans. It was a great lecture.

After Yorktown, we had a late lunch at Wendy's and drove over the Chesapeake Bay Bridge and Tunnel System. Driving over the bridges and tunnels were Brian and Jason's favorite of the day. We stopped at the pier and gift shop, and enjoyed a brisk walk to the end of the pier (it was very cold and windy).

We ate dinner at a Ruby Tuesday's along US 13 and slept at the Hampton Inn in Seaford, Delaware.

Postscript: We also saw a glass bloing demonstration at Jamestown.

The next day (yesterday), we basically just woke up and drove the rest of the way home. Another great family vacation!

Spring Break Vacation 2008 Day 5

March 17, 2008

Today we visited Colonial Williamsburg. We arrived early and spent the entire day.

We strolled around the town with Charlie when we got there. He showed us the house where Thomas Jefferson studied law - there were no schools, you studied with a lawyer for 7 years.

We went to the County Court House where Jason wanted to be the County Clerk and TJ and Brian were judges.

Brian, Jason and TJ all got hats (patriot hats). Whever anyone asked about them being patriots, they replied "No, we are Giants!"

We enjoyed lunch at a coffee house. TJ and Mom had ham biscuits, Dad a sausage and cheese plate and Brian and Jason had boxed lunches.

We all had turns "running" a meeting at the Presbyterian Meeting house.

We toured the capitol building - which was built without fireplaces because the capitol building was already burned to the ground four times.

At 3 o'clock, we got a primer about the Revolutionary Program - Get Revved - to immerse children into the Revolutionary experience.

Brian, Jason and TJ joined the Revolutionary Army. They helped pitch tents and drill. They enjoyed the experience - and so did lots of others. The "rifles" were much too large for Brian and Jason. Brian had a lot of fun calling the drills - it even made the Corporal start laughing. People even stopped us later to take Brian and Jason's picture. This was unanimously the favorite part of the day.

Afterwards, TJ listened to Martha Washington while Brian and Jason watched a sheep get sheared.

We listened to a question and answer time with Martha Washington and listened to George Washington before wandering back to the bus.

It was a really fun day!

We had dinner at TGI Fridays and TJ went swimming while Brian and Jason went to sleep.

Spring Break Vacation 2008 Day 4

March 16, 2008

This morning we went into Washington DC again. We went to Ford's Theatre which was closed for renovations until 2009 and to the building where Lincoln died. This was a boarding house across the street from the theatre.

We walked over to the International Spy Museum and received aliases to wander through the museum. Bob was John Campbell, 34 year ols born in Jamaica. TJ was a 14 year old boy but can't remember his name. I was Greta Schmidt, a 33 year old born in Germany.

As you went through the museum, you remembered who you were and were given more info about "your mission". As you left the museum, you are asked questions regarding your alias.

It was a well put together museum - talking about espionage in all of its forms.

We had lunch at a Subway and headed to Mount Vernon (home of George Washington). It was a great visit (a return trip for me) but you always learn something new.

We strolled through the out buildings and upper gardens waiting for the line through the house to diminish.

Apparantly, one year after the Revolution. George and Martha had over 600 house guests!

We ate at the Virginia Grill in a small town off of I-95.

Bob and Brian's favorite of the day was crawling through the duct work at the spy museum eavesdropping on conversations.

TJ really enjoyed the whole experience at the Spy Museum and answering all the questions about his alias.

Jason enjoyed the movie at the "house-eum" (surprising me because of the war scene)

Mom's favorite was learning more about Mount Vernon.

Wednesday, March 19, 2008

Spring Break Vacation 2008 Day 3

From Jeanne's journal:

March 15, 2008

Today we drove into Washington DC. Thank God we had the Tom-Tom. The way we were planning to go was at a dead stand still - so we drove on and Tom-Tom planned a new route - which was cool because we just stumbled upon the Capitol after wandering through the Capitol Hill area of the city.

We were able to find parking by the Washington Monument. We wandered up to the Monument, but were unable to get tickets to go into the building (tickets were gone by 8:30 am and we got there about 11:00)

The day started off windy but became a wonderful spring day.

After the Washington Monument, we wandered past the World War II monument, down past the reflecting pond to the Lincoln Memorial.

When we were finished, we shared a snack and wandered over to the Vietnam Veteran's Memorial. We were lucky enough to listen to a volunteer explain the monument. Apparantly, there was much controversy over the monument 25 years ago when it was planned. The winning design was from a Yale student Maya Ying Linis who actually decided to use it as a class project and an entry to the contest (she got a B+). The monument was really a great tribute.

We wandered past the signers of the Declaration of Independence Memorial - many people enjoying Brian and Jason's antics of playing football down the paths.

We visited the Boy Scouts of America monument, with TJ and I wondering about the naked man, while Brian and Jason played in the fountain (there was no water).

We wandered over to the White House Visitors Center - but were unable to get tickets into the White House - we need to go through our Congressman one month in advance.

We walked past the White House and waited for Bob to pick us up at the corner. Brian and Jason entertained the passersby with their imaginary baseball game.

We are staying at the Hampton Inn in Springfield, VA and ate at the Houlihan's across the street.

Oh, I forgot - after getting picked up at the White House, we drove over to the Jefferson Memorial. TJ, Dad and Brian went over to see it while Mom stayed in the car with Jason who wanted a nap.

TJ's favorite was seeing the second face on the Lincoln Memorial.

Dad enjoyed the whole meandering around the monuments.

Mom enjoyed the talk at the Vietnam Veteran's monument.

Jason liked playing baseball in front of the White House.

Brian liked playing baseball too!

Lunch was hotdogs, pretzels and an egg roll from a street vendor.

Spring Break Vacation 2008 Day 2

We almost lost this entry from Jeanne's journal as a gust of wind blew the paper out of our van and into a puddle. Thankfully, the entry was salvaged!

March 14, 2008

Today, we stayed in Philadelphia. We returned to Independence Hall. We were able to get tickets to the 10:20 tour. Apparently, the Declaration of Independence was ratified on July 2nd but was printed on the 4th. Bob and I decided that the 2nd was a Saturday and government being government, they needed to move it to Monday to get a holiday.

10 minutes before the tour was to start, Brian needed to go potty. He had to hold it in until after the tour. I took him to a bathroom while Bob, TJ and Jason toured Congress Hall. After we reconnected, we had lunch at a food court next to the Independence Hall.

We went and mailed our post card and letter at Ben Franklin's Post Office and wend toward the National Constitution Hall. We stumbled upon the US Mint. TJ and Mom went on the tour while Bob, Jason and Brian played on the lawn.

We went into the Constitution Hall which was having an exhibit on baseball - we had to drag TJ out of it.

There was a very interesting "multi-media" presentation about the Constitution. Brian and Jason found it scary. The exhibit had lots of hands on exhibits which were interesting. Brian and Jason liked pressing the buttons.

At the end, we all signed the Constitution and left for the day.
Bob's favorite was Independence Hall and so was mine.

TJ's favorite was the US Mint

Brian and Jason liked playing baseball on the lawn.

What fascinated Bob and myself was how many National Park Rangers remembered us from the day before.

We ate at the Crossroads Diner in Delaware and stayed at the Hampton Inn in Hanover, Maryland.

TJ snapped a whole bunch of pictures that day, so I'll upload a few more. Here's a photo of Chuck, our tour guide through Independence Hall and Congress Hall:

Here's a photo of the chair which George Washington sat at as president of the Constitutional Convention. As the debates raged on, Ben Franklin gazed upon the emblem on the top of the chair and lamented that he cound not determine whether the sun was a rising sun or a setting sun. Finally, when the differences among the delegates were ironed out, he stated that he now, indeed, could see that it was a rising sun:

Spring Break Vacation 2008 Day 1

Today, we got back from a nice family vacation. TJ gets two weeks off for spring break, so we like to take advantage of the time to head south for some warmer weather. Last year, we drove all the way down to Chattanooga, TN. This year, we didn't venture nearly as far, deciding to visit Philly, DC and Williamsburg, VA. As usual, we all had a great time. Jeanne and I are blessed to have kids that travel well, as we both like to do a lot of travelling.

Several years ago, Jeanne decided to start keeping a daily journal during our vacations. So, rather than chronicling the trip myself, I'm going to be lazy and simply retype her journal entries here, embellishing with some pictures where I can.

March 13, 2008

Today we started our vacation. We arrived at Philadelphia around 1PM. We drove around looking for parking (It's much harder with a luggage carrier and ham radio antenna on the roof).

We arrived at the Independence Hall Visitor Center after eating hot dogs on the street. The tickets to see Independence Hall were gone by the time we got there.

A lovely lady named Rosemary Thomas was very helpful showing us things to do. We visited the Liberty Bell and Franklin Court

Franklin Court was where Ben Franklin lived. This house was torn down by his grandson in 1812 - to build a street. Today there is a skeleton house where Ben's house stood, and an underground museum. Brian and Jason liked the telephones. Afterwards, we went to the only post office which uses Ben Franklin's signature.

After we toured a museum on the post office, we walked over to Christ Church, a church where all of the signers of the Declaration of Independence worshiped at least once.

We stayed in Trevose and ate at a Bugaboo Creek in Bensalem (which we ate in once before with TJ when we visited Sesame Place).

Monday, March 3, 2008


I got a chance to sit down and read the articles on clinical trials in the latest issue of PKD Progress magazine. It was certainly a worthwhile read. There were three informative articles. One described the process of clinical trials in general. Another described the two most promising current studies, HALT PKD and TEMPO 3/4 (Tolvaptan). A third related personal stories of people's involvement in these clinical trials.

The TEMPO trial is the one everyone seems to be getting most excited about. It appears that Tolvaptan holds the greatest promise of getting a drug on the market to treat PKD in the near future. However, I understand that people who are on the drug tend to be always thirsty and also require frequent trips to the bathroom, so it is not without some downside.

Now, I suppose if your PKD has progressed to the state that the cysts are causing discomfort and your kidney function is being impacted, you might not care much about having to deal with these side effects. But, what if you are still relatively young, you get diagnosed with PKD, but really don't have much cyst growth and are experiencing good kidney function? Would it be recommended to go on the drug anyway to increase the chances that you will never experience end-stage kidney failure? Or would it be recommended to wait until the cysts had progressed far enough along that kidney failure was more of a certainty? Since about 1/2 of PKD patients don't experience kidney failure, maybe by taking the drug, you could actually be decreasing your quality of life compared to not taking it.

I wonder about this as I think about the future for my children. Right now, the decision about whether or not they should get tested for PKD seems pretty straightforward. If a test were to determine they had PKD, it could be endangering their future insurability, but we really wouldn't be able to do much in terms of treating the PKD. Therefore, as long as there are no symptoms, there appears to be no reason to be proactive in finding out for sure. But, if Tolvaptan (or some other drug) were to become a treatment option, this decision would get more complicated.