Wednesday, April 23, 2008

Vote for Starbucks idea "A Penny to fight PKD"

I came across this blog post from Supergirl which points to a Starbucks idea where someone is proposing that one penny of every cup of coffee or tea sold by Starbucks would be donated to the PKD Foundation in honor of Sandra Andersen, a Starbucks employee who recently donated a kidney to one of her customers who had PKD.

I gather the way this program works is that anyone can submit an idea to the website. Then, a team of Starbucks employees gets together from time to time and evaluates the various ideas and decides whether or not to proceed forward with them. One of the factors they take into account is the popularity of an idea and they provide a voting mechanism whereby you can show your support for an idea. Currently, the "Penny to Fight PKD Campaign" idea is one of the most popular ideas submitted to date. So, I highly encourage anyone reading this to go over to the Starbucks website, sign up for an id, and show your support by voting for this idea. I just did so myself. Even if Starbucks does not end up adopting the idea, the publicity that comes of this idea being popular can only be a good thing.

Sunday, April 20, 2008

Seeing the Pope at the Youth Rally

TJ and Jeanne were privileged enough to obtain tickets to see the Pope yesterday at the Youth Rally at St. Joseph's Seminary down in Yonkers. Despite having to deal with some logistical problems with food and transportation, they thoroughly enjoyed the day as an experience of a lifetime. And the weather couldn't have been more perfect - especially considering that it is still April here in New York.

I found the experience powerful just watching it on TV. I'm sure it was even more so being there in person.

Here's TJ hanging out soon after arrival.

And here is the view from the spot that the group from St. Martin's scouted out.

Unfortunately, the plan for distributing food wasn't working out so well. After waiting on line for almost three hours trying to get something to eat, Jeanne started to become faint and had to be brought to the first aid station.

Soon after, they closed off the outer area where Jeanne was so that she couldn't get back to the rest of the group. The good news was that this enabled her to get a good view of the Pope's arrival in his Popemobile.

They did have a Jumbotron in the area available to watch the ceremony from, but unfortunately, there was no audio.

Jeanne did find a taller girl (from Pleasant Valley) to reach up high and take some photos from their remote location. I'm glad I invested in a good optical zoom when we bought our latest digitial camera.

TJ thankfully was able to watch the ceremonies from the closer location, but since Jeanne had the camera, they didn't get any good pictures from that vantage point.

Jeanne didn't mind too much that she had to watch from so far away. After all, how many other people can say they've hung out with nuns in baseball caps?

Thursday, April 17, 2008

Senate to debate GINA this week

I got an action alert from the PKD Foundation yesterday. The Senate apparantly will finally be getting around to debating the Genetic Information Discrimination Act this week, nearly one year after the bill was passed by the house. For more information, see the PKD Foundation web site. The science of genetics has made some amazing advances in recent decades. However, without sufficient legislation in place to protect against genetic discrimination, one runs the danger of putting themselves in a worse position knowing they definitively have a disease like PKD than if they didn't know.

Unfortunately, I've checked a couple of congressional web sites and can't find any mention of it being on the agenda. If someone finds some information on GINA being discussed in the Senate, please leave me a comment pointing me to it.

Sunday, April 13, 2008

First Walk for PKD planning meeting for 2008

Last Thursday night was the first planning meeting for this year's Hudson Valley Chapter Walk for PKD. It was also the first one ever for me, as I attempt to get more involved in the chapter happenings.

The big change for this coming year is that there will be two big "professionally run" walks which will be held in New York and Los Angeles. These will be held in October instead of September, when the rest of the walks around the nation will be held. Because of the proximity of our walk to New York City, some of the changes they are making for the New York City walk will impact our walk, including the elimination of the registration fee and a requirement to raise $100 in donations in order to receive a T-shirt. While I welcome the elimination of the registration fee, I'm not sure how well received the "no T-shirt unless you raise $100" will go over. Heidi mentioned that of the 247 walkers we had this past year, only 65 raised $50 or more. If all goes the way the PKD Foundation envisions, those 180-ish other people will become motivated to raise more money. We'll see.....

We also found out there will be no walk in Albany this year. This is pretty disappointing, as the Albany walk raised over $34,000 last year. Hopefully, some of those walkers will be willing to make the trip down our way, or to one of the walks in western New York.

The bulk of the meeting was spent describing the various walk committees which are in place, who's in charge, and what help they need. For me, since I'm about 50 miles away, I think I'll focus on things that I can handle from a distance - helping to obtain sponsorships, raising publicity through the media, distributing posters and fliers and things like that.

Upcoming meetings over the next couple of months:

Tue, April 15 - Walk for PKD Planning Conference Call
Wed, May 7 - Walk for PKD Planning meeting
Wed, May 28 - Support Group meeting
Tue, June 3 - Walk for PKD Planning meeting

Wednesday, April 2, 2008

Sharing Our Story

Heidi, who is the Hudson Valley PKD Chapter Coordinator, invited TJ and I to share our PKD stories such that they might be used for publicity purposes for this year's Walk for PKD. We finally got around to filling out the necessary paperwork tonight after TJ finished up his homework. Here are TJ's responses to some of the questions which were asked on the form. Since its not something we tend to discuss much, I found it very interesting to hear his perspective.

2) Please provide a summary of your experiences with PKD. (We’re especially interested in details such as whether you’ve had a transplant, how many people in your family have PKD, when you were diagnosed, what your health is like now, etc…)

My mom was diagnosed with PKD before I was born. Her being pregnant with me took its toll on her kidneys and three years later, she needed a transplant. She now has to take several medications a day on a time schedule in order to keep her body from rejecting the kidney. In order to possibly find a cure for this disease, I have raised more than $1000 through the Walk for PKD and hope to raise even more this year.

3) What is your hope for your family’s future and the future of PKD?

I hope that my brothers and I do not have the disease and if we do, that we can help find a cure through clinical trials.

4) Why do you support the PKD Foundation and its vision that “no one suffered the full effects of PKD?”

I support the PKD Foundation because it is the only organization that devotes the funds that it raises to the awareness and research of this disease which the US government pays relatively no attention to, even though it is more common that several other diseases it pays more attention to. I feel that the government should pay more attention to this disease because it affects more of the population than these other diseases.