Visit to the Panhandle

After Dance Marathon on Valentine’s Day Yoko and I planned to head north to Blue Ridge, Georgia to check out mountain cabins for the summer months. The weekend turned out to be unusually cold. The forecast for Georgia was snow and ice in the mountains where we were headed. In fact, travel conditions were so bad our real estate agent called to advise us NOT to come! Waiving me off the trip was the right thing to do and, by doing that, the agent has earned my respect and loyalty.

We had planned to leave Tallahassee for Georgia Sunday afternoon but now, suddenly, we had no place to go. We had never seen any of the Florida panhandle, so this was a good opportunity to explore. We decided to go west as far as Destin and Ft Walton Beach area and then take two days to drive home along the coast, checking on local real estate along the way.

We found a “four star” Hilton Hotel that looked to be quite nice for a very reasonable price. The off-season rate advertised on the internet was $109 per night. We figured we would not need reservations at this time of year anyway, so we left Tallahassee around 4 PM Sunday and made it to the Sandestin Hilton by 7 PM.

When we arrived there was no bellman or valet on duty to greet us and the lobby was deserted. I dropped Yoko off with the bags and self parked. When we got to the front desk, Olga, the receptionist, greeted us with a less than friendly demeanor. I asked if there were any rooms available. In a Slavic accent Olga said there were “a few rooms” at $169 per night plus parking. (Huh? Who does she think she’s kidding? I don’t think there were 10 cars in the parking lot I had just come from and not a sole was in sight.)

I explained to Olga that I had checked the internet before selecting this hotel and the partial ocean view room rate advertised was $109 per night. Olga explained that that was the internet reservation rate, not the walk-in rate. “Oh,” I said, “Maybe I should just go back to my car and make a reservation on my laptop at the $109.00 rate?” At that point, Olga relented and gave us a very nice room for $109.00, but then informed us that there was a $10 charge for parking and $20 for valet parking. “Hmmm…well, it’s too late for the valet parking”, I said. “Is there someplace I can park where I do not get charged?” (Of course, I already knew the answer was “no.”) Hilton has now earned my enmity along with the airlines that do a head fake with “low fares” and then charge for baggage and incidentals.

On Monday morning we checked out and drove along Route 98, which follows the panhandle coast. At times it seemed like we were the only car on the road. We stopped and visited a few of the newer developments along Emerald Coast Parkway, including an upscale development called Blue Mountain Beach, another one called Watermark, and St Georges Island. Everywhere we went we found a plethora of “for sale” and “foreclosure” signs, exceedingly high prices, and no customers or tourists in sight. My take was that prices will need to be significantly lower before any serious buyers emerge.

We arrived in Perry, Florida at 7 PM exhausted and hungry and needing to find a clean place to stay. Luckily, we came across a sparkling new Holiday Inn Express. The smiling young desk clerk said we could have any room for $99 a night. That included a buffet breakfast and a newspaper in the morning. Then, without our asking, the coup de grace – she offered to give us a $15 discount to $84 if we are members of AARP! Sold!

Anger at Government Indifference

Back in November I wrote an online post about how lung cancer patients need to fight the stigma of lung cancer. It is a topic that really hit home with lung cancer patients and I have ignited a little firestorm of discussion and debate on the topic. Lung cancer patients are angry with the government’s indifference.

My original posting really had everything to do with discussing how to fight the stigma of lung cancer and nothing to do with the negative health effects of smoking. Smoking is bad for you. There is no debate any longer and that was not the point of my posting. Yet it seems whenever I talk about lung cancer I end up in a discussion about smoking. It’s infuriating because that is exactly my point! It’s not about smoking. It’s about lung cancer – how to detect it, treat it and prevent it!

Remember the 1980's and the AIDS movement? I think that lung cancer has the same kind of stigma attached to it. There was little funding for AIDS research in the early 1980’s because AIDS was thought to be caused by the “lifestyle” of gays and drug addicts. In the same way, lung cancer today has only a small amount of research funding because the disease is thought to be a self-inflicted “lifestyle” disease caused by smoking. AIDS got more attention and research dollars when activists marched on Washington and people began to realize that "innocents" (i.e. mothers and newborns) were also getting the disease.

I think lung cancer patients need to be pointing out two things: not only do many innocent non-smokers develop lung cancer, but people who QUIT smoking, even decades ago and live a healthy lifestyle today, can and do frequently develop lung cancer. More dollars devoted to research into lung cancer early detection could save 70,000 lives a YEAR, according to an actuarial study released on February 16th by Lung Cancer Alliance. If nothing else, we should be fighting to give FUTURE lung cancer patients a better chance of surviving the disease. There are 70 million former smokers at risk in this country and many more millions who were or are exposed to second hand smoke (and other lung cancer causing agents). They need to be given a chance. They shouldn't just be written off with our "oh well, deserves you right" attitude. My interest is to find a way to increase public understanding for the critical need for lung cancer research. We need to fight the stigma of lung cancer with facts.

The legal sale of cigarettes continues to this day despite the fact that nicotine is KNOWN to create a habit forming addiction that can kill or harm you just as surely as lead-based paint or asbestos. Where is the government in regulating THIS drug and keeping it out of the hands of our children? Where is the Consumer Products Safety Commission? I am on a drug-trial for Stimuvax -- a lung cancer vaccine that could save or extend the lives of all of us struggling with lung cancer, but the law requires extensive trials and testing before allowing a new drug on the market. (I'd like to see the trials the Federal government did on cigarettes (and other carcinogens) before allowing them on the market!) Shouldn’t we we be giving a drug like Stimuvax to people at high risk of developing lung cancer? Don’t the tens of millions of people at risk of developing lung cancer deserve research into early detection or, better yet, potential "lung cancer preventatives" especially since it is not likely we will ever ban the sale of tobacco products?

In the next five years 800,000 people in this country will die from lung cancer before potential life saving drugs like Stimuvax are approved for use. What, on earth, is the FDA protecting us from?

Feeling the Love on Valentines Day

Yoko and I took off for Tallahassee on Valentine’s Day weekend to see our daughter Jessica at Florida State. Jessie is deeply involved with Dance Marathon, which is a 40 hour danceathon to raise money for The Children’s Miracle Network (CMN). Last year FSU’s Dance Marathon donated over $380,000 in proceeds to Shands Children Hospital in Gainesville, a CMN supported facility.

Jessie has volunteered to help with the FSU event for the past three years. She serves on the Dance Marathon organizing committee and is responsible for media production, including creating and editing all the music, video and still photography used prior to, during and after the event. Dance Marathon has become the centerpiece of her college career. In fact, because of Dance Marathon, Jessie has decided to pursue event management as a career.

My alma mater, Penn State, is the school that came up with the idea of a Dance Marathon fundraiser. It was started in 1973 by the Penn State’s Inter-fraternity Council. That year just $2000 was raised by 39 couples dancing for 30 hours straight. Penn State donated the money it raised to the Butler County Association of Retarded Citizens.

In 1977, Dance Marathon was changed to a 48-hour event and became an annual benefit for the Four Diamonds Fund at Penn State’s Hershey Medical Center. In 1990, Indiana University began their own Dance Marathon to raise funds for the Ryan White Infectious Disease Center at Riley Hospital for Children.

In 1995, the Children’s Miracle Network developed a fundraising program inspired by these early dance marathons. The first year of the program, four schools participated and raised a total of $142,000. Six more schools, including FSU, were added to the program the following year, raising $300,000. And the rest, as they say, is history.

Today, across the nation, over 80 schools hold Dance Marathons to raise money for Children’s Miracle Network. The FSU Dance Marathon alone has raised $2.2 million since 1996. Over $40 million has been raised since 1996. What a great story!

Yoko and I decided this year would be a good time to check out what Jessie has been up to all this time, so we made plans to go up on Valentine’s Day weekend to witness the event for ourselves. After that we were going to continue on to Blue Ridge, Georgia for a romantic weekend and look for a summer cabin.

I wasn’t sure what to expect when we showed up at the Leon Civic Center to witness the opening of Dance Marathon. Throbbing music with a heavy drumbeat was blaring as we made our way into the heavily decorated hall where all the dancing was about to begin. In years gone by the FSU marathon was one session that continued for 36 hours straight. This year to increase participation (and the amount of money raised) the kids decided to do two sessions of 20 hours each with a three hour break in between. (600 kids participate in each session.) We got there just at the kids were entering the hall for the second session.

The excitement in the hall was tangible as the dancers got ready to stand and dance for 20 hours straight. The kickoff started with a 34 minute music video countdown, largely edited by my daughter. Then at exactly 7 PM the marathon officially begins. The organizing committee starts things off with a high energy nine minute line dance that all 1200 dancers will learn before the end of the night. (The line dance happens at the top of each hour for the entire 20 hours.

You could feel the love of the student dancers literally giving of themselves on Valentine’s Day. The marathon, which ended at 3 PM on Sunday raised over $ 450,000. Yoko and I could not be more proud of the part Jessie played.

"We Have a Dream" Team

A few months ago I was asked if I would be the honorary chair of the Port Charlotte Relay for Life event, which is to take place May 1^st – 2^nd at Port Charlotte High School. The proceeds from the event benefit our local American Cancer Society and the programs they have to provide education and support for cancer patients here in Charlotte County. I’ve known about Relay for Life for many years, but I’ve never been involved. I didn’t know what exactly happens at Relay or how the event raises money. Nevertheless, I was honored to be asked and I agreed to help. Now I’m learning about what it is and how it works. It is a pretty impressive fundraiser with enthusiastic leadership.

This year the Port Charlotte Relay for Life theme is “Hopestock” -- a sixties “Woodstock” reference. The organizers are hoping to have 55 teams participate and raise at least $140,000. I decided that if I am going to be involved, I’m going to be “all in” in raising awareness and money.

The first thing I did was ask my colleagues at work to help me form a team, to which they all readily agreed. They also agreed that there is no point in doing this if we aren’t going to give it our all. Game on!

The name our team selected is “We Have a Dream” Team – harking back to the 1960’s civil rights movement and Martin Luther King’s famous speech. Of course, our dream is that we finally make progress in the war on cancer, which, like the war in Vietnam, seems to have gone on and on with no end in sight. Our dream is to “stop the dying and end the war” by finding a cure for cancer.

There are six of us in our office and we are each charged with finding 10 team mates (friends and family), who will join us to walk the track May 1^st and 2^nd. I am hoping that by the end of this month the six of us can find 60 people to come out and join us. We are asking each person who joins our team to register online and commit to raising $200. That alone gets us to $12,000. We hope to raise another $3000 with small events in the coming months, starting with a Rummage Sale being planned for Feb 27^th at my office. (If you would like to donate stuff to sell, contact me at tecappiello@gmail.com for details.)

There are lots of ways to contribute to Relay. You can sign up to create your own team or you can join our “We Have a Dream” team or another team online at www.relayforlife.org. (Look for our Port Charlotte event by searching by city.)

If you would like to help draw attention to the Relay for Life event, consider making a $25 donation to have a flock of pink flamingos planted in a friend’s or neighbor’s yard.

You can honor someone you know who is fighting cancer or has lost the battle by donating any amount for a Luminaria (candle bag) that lights the track the night of the event. If you’re a business, you might consider making a $115 donation for a Sunshine Sign that will line the track on event day.

Sadly, you don’t have to look hard to find someone you know – a friend, co-worker, relative -- who has been affected by cancer. Each year the American Cancer Society estimates the number of new cancer cases and deaths in the United States. In 2009, 1,479,350 new cancer cases and 562,340 deaths from cancer were projected to occur in the US. Fully one third of those deaths – 160,000 -- are from lung cancer. Progress is being made in reducing the incidence and mortality rates from cancer but progress can be accelerated if we support cancer prevention, early detection and treatment.

Demonstrate your support with the “We Have a Dream” Port Charlotte Relay for Life team!