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Health Neighborhood Festival in Los Angeles!
Posted by:  Anne Marie Herwig on Nov 03, 2009
Last week I was fortunate enough to make it to the 4th annual Healthy Neighborhood Festival held at the California Endowment’s Center for Healthy Communities near Chinatown in Los Angeles. It was a block party for downtown Los Angeles residents that offered fun ways to get fit and lead a healthy lifestyle. All activities were free and included hoola-hooping (a serious workout that I highly recommend), dancing, rock climbing, making fresh salads and health screenings for families.
It was great to see all of the kids enjoying their salads and fresh fruit; no one was asking for chips or candy. They were running around from one activity to the next with big smiles on their faces. Check out the video to learn more about the event and see some kids learning a new dance…
And check out the California Endowment for more information about how you can join the healthy lifestyle movement! www.calendow.org
Kenny - The 185 pound Polycystic Kidney Crusader
Posted by: EthanA on Nov 03, 2009
If you've read my recent blog posts you may have noticed I've been on a little jag lately about wearing costumes in races and raising money for good causes. I'm not sure what got into me...maybe it's just because I'm a fan of costumes and ridiculousness in general. But in the spirit of keeping Halloween (my all time favorite holiday) alive for one more week, I have one last blog post about a costumed crusader that I want to share. A few months ago, one of my co-workers introduced me to Bill Brazell. Bill is a pretty amazing guy. He's a Harvard grad with a masters degree from Berkeley. He's on the board of trustees for the National PKD Foundation and he's a tai chi master to boot. But what I find most amazing about Bill (and maybe I'm just a little jealous) is that he rocks out a gigantic kidney costume to help raise awareness for PKD.  Never heard of PKD? You're not alone. Most people haven't. PKD stands for Polycystic Kidney Disease. 'Poly-' means 'many' -- people with PKD have many cysts, or pockets of fluid, throughout their kidneys. PKD comes in two forms. The dominant form, ADPKD (autosomal dominant PKD), is much more common, occurring in as many as 1 in 400 people. When a person with ADPKD has a child, the child has a 50-50 chance of also developing ADPKD, which can lead to kidney failure in the thirties, forties or fifties. The recessive form, ARPKD (autosomal recessive PKD), is rarer and more brutal. Thirty percent of children born with ARPKD fail to live even a month after their birth. Of those who do make it a month, another 28% will die before reaching their tenth birthday. Basically PKD is a pretty awful disease that few people even know about. But the good news is that researchers are super-close to finding a cure. That's why Bill is on a crusade to get the word out and raise money for research. This past weekend I was in New York and had a chance to catch up with Bill and learn more about PKD, the PKD walk and gigantic polycystic kidney outfits. Check it out.
(1) Tell us a little bit about what motivated you to get involved in the PKD Foundation?I got involved because my father had PKD, and I was diagnosed when I was a freshman in college. For many years I found the whole idea vaguely depressing, and I waited passively for 'science' to find a cure. It never really occurred to me that I could help science along. Then my first cousin, Mike, died of PKD complications, leaving behind two young children. He was just 35; had been born less than five months before I was. His death jolted me into doing what I could to hurry 'science' along -- to raise money and awareness so a cure might come more quickly.
(2) You just participated in the Tri-state PKD walk on Oct 25th. That's one of the big fundraisers for PKD. How'd it go this year?
The Walk this past Sunday was a huge success, thanks. The TriState Walk raised just $34,000 two years ago. We knew we could raise more money in NYC, but we had to convince our core that doing so was the best way to cure PKD. Many wanted us to hold gala dinners, which tend to burn out volunteers and to net smaller amounts of money than you can net with a Walk, where overhead is lower. We began convincing folks of this last year, when the Walk brought in $139,000. This year, it's brought in more than $211,000 -- and the money is still coming in. This is a huge win.
(3) I have heard that someone by the name of Kenny the Kidney made an appearance at the walk. Please tell us: who is Kenny the Kidney guy and what's his deal?
A normal human kidney is the size of a fist, and weighs a few ounces. A polycystic kidney can grow as large as a football, and can weigh 38 pounds -- just one, and people tend to have two. Imagine finding room for two 38-pound footballs in your gut!
Kenny the Kidney is a polycystic kidney who grew larger still. We think his original body consumed a radioactive milkshake. Whatever the reason, Kenny stands more than 6'6" tall, and weighs more than 185 pounds. Coincidentally, I have the same measurements. 
(4) Haha. What a coincidence. So how did the Kidney costume come about? You gotta admit, that's pretty unusual.
I told a woman I'd just met, Halley Hopkins, that I wanted to raise awareness of PKD, maybe by climbing the stairs of the Empire State Building -- something foolish, I didn't know what. Halley, who is now a good friend, said, "You need a kidney costume! And I know just who will make one for you." She asked Corinne Leigh and Rob Czar of Threadbanger.com, who had never met me, to make a kidney costume. They kindly agreed, and made a wonderful costume, and FedExed it from Florida, which was then their home, to Schenectady, NY, in time for a Walk for PKD nearby. And they wouldn't take a penny for the costume material, or the labor, or the shipping -- nothing. Meanwhile, Travis Donia, who had introduced me to Halley, built me a web site, and then revamped it with the help of Claire D'Aoust and Yoshi Uemura. And Ramy Youssef, an amazing guy who was then in high school, offered to work with his friends Kyle, John, Chris and many others to make a music video for Kenny . None of these good people had ever heard of PKD before they met me. Yet all of them worked for free. They worked much harder than some people in my family, who you might expect would be more motivated to cure it. The generosity of these people -- it brings tears to your eyes. Or would, if I weren't so macho.
(5) Okay, macho man. In the Kenny the Kidney Music Video, you state that sometimes you wish there was a mammary? Do you feel that breast cancer gets too much attention in the media?
No, not at all. That lyric (from the music video) wasn't a comment on breast cancer at all -- although you're not the first to wonder that. We were parodying the original Weezer song, and we just needed a word that sounded like 'memory,' which was the original lyric. We thought 'mammary' would be funny, because ... well, if you have to explain it, it's no longer funny. The lyric wasn't a comment on breast cancer at all. My mom is a two-time breast cancer survivor, which is a scary thing, and I'm absolutely thrilled that breast cancer gets great attention. I'd like to see breast cancer get even more attention, so it could actually be cured. I was just making a small joke about kidneys being much less interesting, in general, than breasts. Let's face it: Breasts really *are* more interesting than kidneys. As a man, I don't mind that. As a kidney, it makes me sulk a little.
(5) Why do you think so few people know about PKD?
This is something that puzzles many of us who deal with PKD, and we've come up with a number of possibilities: (1) We have no big celebrity talking about PKD. The great playwright Neil Simon has PKD, but doesn't like to talk about it. The humorist Erma Bombeck died of it, but, like Mr. Simon, was from a more private generation. (2) People with PKD can hide the fact that they have it. No one would know that I have it, except that I talk about it, and sometimes walk around dressed as a kidney. As opposed to people with ALS or other illnesses, people with PKD have a choice whether to disclose. I kept quiet about it for many years, and only began talking about it after my cousin died, and I realized that if I did nothing, I might be next. Silence won't cure PKD. But many who have it remain silent, because the risks of disclosure are real -- loss of health insurance, loss of employment opportunities, loss of relationships. (3) Most of the people who have PKD don't yet know that they have it. When they find out, some become activists, some don't -- as with any disease. 
(6) Well, I feel like Kenny the kidney must be working to bring awareness to PKD. I just saw an article in the New York Times about the disease and PKD recently got a nice little plug on the CBS morning show. Any thoughts on the recent media coverage?
Those of us in the PKD community understand well what the Waddington family, the ones featured in the NY Times and on CNN, has gone through -- the father needed a kidney transplant, but the parents forbade their two sons to get tested as possible matches, because they feared that one or both of them might turn out to have PKD -- and might be unable to get health insurance as a result. That scenario is very familiar to us, and we were grateful to the Waddingtons for going public about their dilemma, and to Nicholas Kristof and CNN for shining a light on it. We were also grateful to the CBS Early Show for talking about PKD, and to weatherman Dave Price for wearing our Walk for PKD hat. These mentions may seem brief to the rest of the world, but they mean a lot to us. Each year when we lobby our congresspeople on Capitol Hill in Washington, we have to explain all over again to a new crop of legislative aides what PKD is and why it matters. When we raise money for it, we have to first explain what it is. These media mentions give us something to point to: We're not the only ones who care about this disease.
(7) I'm glad PKD is finally getting a tiny bit of exposure. How can our readers help to further spread the word about PKD?
A number of talented volunteers made the Kenny the Kidney music video with the hope that it would spread -- that people would enjoy it, and pass it on to their friends. It would be lovely if your readers would do that. And if they enter a friend's email, they'll be able to see a couple of *secret* videos -- a new feature. We'll never abuse those email addresses; we don't even save them. We just offer the videos in an effort to get people to pass the word about PKD. Folks can also pass on the PKD Foundation's homepage, pkdcure.org, to anyone who wants to know more about PKD. The Foundation is there to help anyone who's newly diagnosed, or just wants more information about diet, etc. [editor's note: Bill didn't mention this but he also has a fundraising page if you know anyone who would feel inclined to donate]
(8) Last Question. Do you, by any chance, know this guy? The giant testicle guy next to Pat was running for testicular cancer. Perhaps a league of superheros is in order?
Ha! No, we don't all know each other. But I'd be honored to meet him -- we seem to be on similar missions. Embrace the embarrassing! It's the only path to a cure. And even if you don't cure it -- at least you're having fun.
Cool, well thanks for the interview, Bill. I wish you the best of luck and look forward to catching up again soon.
Halloween Party on Wheels! Critical Mass Miami
Posted by: DebbieD on Nov 03, 2009
You might have just read James' post about Critical Mass Halloween, an event that happens all over the country, and maybe the world. I attended the Miami one, which was the biggest group ride I've been on in the entire year that I've been here! The streets of Miami have never seen anything so huge, and it was definitely the highlight of my Halloween. There was a great article the next day in the Miami Herald about our "Strength in Numbers." It explained Critical Mass for those people in their cars who were wondering "what the hell is going on" which is great in helping to raise awareness!! The article also talks about how the Miami Police Chief is an avid cyclists, so he is not about to go after the riders. YAY! There were over 200 people!  Many social issues were addressed through costumes; gay rights, animal rights..  Insurance,  personally, I like to go for the more *classic* costumes  More classics, Wednesday & Lydia  Take back the streets!! Si se puede!  Insert wicked witch on a bike music here:  Biking makes everyone so HAPPY!  I stand corrected, 199 cyclists, and 1 rollerblader!  This is Rydel, from Miami Bike Scene, that organizes the monthly rides!  Check out Rydel's awesome VIDEO of this event and more pictures can be found here.Happy November!
Lisa Lake: Coach of the Year
Posted by: trinachi on Nov 02, 2009
 New York City youth rugby coach Lisa Lake was recently nominated as Coach of the Year by Play It Forward essay writer Willie Dominguez. In an Up2Us press release, Lake noted that “Coaches have a tremendous opportunity to not only help young people improve their game, but to help instill values – strength, commitment, perseverance – that are important in life as well.” [Left: Play It Forward winner Willie Dominguez and NYC Rugby Coach Lisa Lake]Here's what Lisa Lake has to say about her experience coaching youth rugby: What's your background in coaching rugby?I started playing when I was 33, and I was on the National Team. Then I began coaching with the Under 19 Rugby Program in 2006 through the New York Rugby Club. A lot of the kids in the program are from my high school, but we train kids from all over the city. Before we started the program, we didn't have a gym or any equipment. Most of the kids didn't have access to sports programs. I got tired of hearing the kids complain about not being able to play sports, so I started holding some rugby practices on the median strip on the highway. We have grown a lot since then. Now we have about 40 boys and 20 girls in the program. The majority of our kids are from public schools, and we have a lot of kids from the Bronx, Queens, and Manhattan. What's the most difficult part of coaching?It's like a second full-time job. I often put in as many hours coaching as I do teaching. I'm the coach for the boys team, and I have to make sure that the uniforms are washed, that the kids know where they're going, and that we have access to practice space. I'm also busy pushing these kids to go to colllege, and helping with college essays and homework. Playing rugby, coaching, and working all at the same time can be rough. What's the most rewarding part?Every kid who has graduated from our program has also graduated from high school, and about 85 percent are going to college. Most of our program graduates are still playing rugby. It's really good to see our kids getting into college and continuing to play. Did you have a coach who made an impact on your life?My high school basketball coach, Coach Brown, was a great guy. He was also my advisor and made sure that I stayed on track and gave my best, all of the time. He had a big influence on how I coach today. I understand that you just went to Washington D.C. for the National Up2Us conference. What was that like?It was so cool! The Up2Us folks ran great workshops and presented awards. We had the chance to hear about different people who are involved in really interesting programs. Every person there had the same thing in common: we all really want to create a supportive community for kids, to mentor them and help them along the way. It was pretty amazing. My award was presented by Lillian Greene-Chamberlain, the first U.S. national champion in the 800m track and field event, and Nathaniel Mills, a 3-time Olympic speed skater who teaches inner city kids to skate in Washington, D.C. I was so humbled by my nomination. To read everything that my players have written about me was an amazing experience. You don't often get to see the impact that you've had on all of your players, and I'm very thankful for it. Anything else we should know?We wouldn't be able to run the program without the support of our entire rugby club. Some people give time, some give money, some donate jerseys or shorts. I'm very appreciative that we have so much support for our program. Also, if there are any kids out there who want to play rugby, we're always looking for players. Thanks, Lisa. Your contributions to the rugby program are also very much appreciated. Learn more about Coach Lisa Lake in the Up2Us press release, and read Willie Dominguez' Play It Forward entry.
GimpGirl Adventures in Irvine
Posted by: OakleyAM on Nov 02, 2009
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