On Saturday June 6, 2009, 9 am to noon, at Tropicana Field in St. Petersburg, the Greater Florida Chapter of the Lupus Foundation of America will present Walk for Lupus Now 2009, a charity walk to benefit people with lupus.

We are all familiar with diseases for which there are charity walks, such as breast cancer and AIDS, but we might not be as familiar with the disease of lupus unless a friend or relative has this difficult condition. Lupus is an autoimmune disease which is inflammatory and chronic. It ranges from mild to moderate to life-threatening. It is a remitting/flaring disease. It is not curable. The cause is not known but there seems to be a genetic predisposition. Here are some facts about lupus extracted from the the Greater Florida Chapter of the Lupus Foundation of America brochure:

• 4 times more Americans have lupus than have multiple sclerosis.
• 1.5 million Americans have a form of lupus, 1 in 200, 90,000 in the state of Florida, about 5,000 in Hillsborough County alone.
• 9 out of 10 lupus patients are women.
• Lupus develops most often between the ages of 14 and 45 but can develop at any age.
• Lupus is three times more prevalent in persons of color (African American, Hispanic, Asian, Native American) than in Caucasians.
• Lupus can develop in any person regardless of age, gender or ethnicity.
• Many lupus patients are unable to work at all or can only work part time, and are therefore uninsured.
• Lupus is expensive to manage ($6,000-10,000 a year and up).
• November 20, 1958 marks the last time the FDA approved a medication specifically for the treatment of lupus.
• All of the medications used in the treatment of lupus have toxic side effects.
• Left untreated, lupus patients are at risk for permanent organ damage and even death.

Greater Florida Chapter of the Lupus Foundation of America President and CEO, Michael J. Keefer, and Maggi McQueen, Chairman of the Board

This is a very real and catastrophic, incurable disease which I would never have heard of had it not been for the fact that a dear friend of many years has it. I have watched her struggle and I know the fight against lupus is one that deserves everyone’s best efforts. I encourage you to support this particular event because, although there are other events in the area that benefit lupus research nationally, this event helps fund local patient education and support through the services of the Greater Florida Chapter of the Lupus Foundation of America (www.lupusflorida.org), a not-for-profit organization dedicated to improving the diagnosis and treatment of lupus, supporting individuals and families affected by the disease and increasing awareness among health professionals and the public. Founded in 1978, this is the largest Florida chapter under the Lupus Foundation of America, Inc., serving more than 90,000 lupus patients in 47 Florida counties. Services include patient advocacy programs, educational seminars and support groups and funding for cutting edge lupus research.

The St. Petersburg walk is unique in that it is held indoors to prevent patients from exposure to the sun, photosensitivity being a common problem for lupus patients. Participants who raise $100 or more will earn an official Walk for Lupus Now T-shirt. Special guests include Master of Ceremonies Nerissa Prest, co-anchor of FOX 13’s Good Day Tampa Bay; Raymond the Rays Mascot; Big Nasty, the Bucs independent fan mascot; Sierra Minot, Miss Florida 2008; and members of the Bucs Cheerleaders. Walk for Lupus Now is a family friendly event with a moon walk, clowns, face painters, magicians and more.

How can you help?

• Register to participate in the Walk (this is non-competitive walk; you don’t have to walk a certain number of miles; you just walk)
• Support a walker by donating (you don’t pledge by the mile; you just make a flat donation for any amount you want)
• Click HERE to register to walk or to donate
• Download this flyer, print, and post where others may see it.*
• Download this brochure, print, read, and share with those who may be interested.*
• For more information call (727) 447-7075, visit www.lupusflorida.org, or email Linda Ruescher at editor@lupusflorida.org.

*Note: to download files, right-click above links and select “Save as…” from popup menu.

Linda Ruescher, Editor and Facilitator Coordinator for Greater Florida Chapter of the Lupus Foundation of America

Medical specialists, clergy, lawyers, morticians, and musicians are a particular group. (No, this is not one of those what-doesn’t-belong-in-this-list things, nor is that a list in descending order of social desirability, although some might think so.) These are professionals often involved in other people’s life transitions: births, blessings, weddings, funerals, etc. Because of that, we (I’m a musician in the real world) usually develop an emotional insulation that enables us to perform hundreds and hundreds of funerals (or even worse, weddings) in a life-time without going (too) crazy.

So it was that when I was the choral director on a church choir performing tour of the Vatican and Italy, that I wound up conducting a choral mass in a dark underground crypt, literally inches away from the entombed body of St. Francis of Assisi, and surrounded by the tombs of his first followers. Even emotionally immune, hard-hearted-me was greatly moved. This was one gig (musician talk for “engagement”) that was not just a gig.

If there was ever somebody who deserved the title. Saint (and in my opinion, not many do), it was Francis of Assisi. No use recounting his story. Everyone of almost every religion (or none) knows it.

The pictures in this post are from my visit to Assisi. It was definitely BDC (before digital cameras), but that’s what scanners are for.

Assisi is a small town in the middle of Italy, that looks out over rolling hills of farmland. Bees hum about trellises and window boxes of flowers and the air is warm and humid but fresh and unspoiled.

The Basilica of San Francesco Assisi which rests atop the crypt where we performed was severely damaged by an earthquake in 1997. Four people were killed and some important artwork was permanently destroyed. The building was eventually restored and improved but at a cost that was controversial (see this BBC News article).

That controversy aside, the values espoused by St. Francis have inspired many. One such inspiration is the Francis House (4703 N. Florida Ave., Tampa, FL 33603; 813-237- 3066) which “is an interfaith center designed to respond with compassion and justice to the spiritual, emotional, educational and physical well being of individuals and families infected, affected or at risk for HIV/AIDS.

“A day respite center for people infected or affected by HIV / AIDS, Francis House is the only respite program of its kind in the tri-city area of Tampa, St. Petersburg, and Clearwater.” (Quotes from Francis House website.)

December 1, 2008 is World AIDS Day. As part of the group, Bloggers UNITE, I would like to encourage you, during this season of giving, to remember Francis House and give them a generous donation.

The Tampa Bay area has many excellent research and treatment centers for HIV and AIDS, such as:

• the USF HIV Clinical Research Unit and the USF Southeast Region STD/HIV Prevention Training Center (SEPTC),
• the Tampa Bay AIDS Network (combined Gulf Coast Jewish Family Services and the Tampa AIDS Network),
• Metro Charities (their thrift shop in St. Pete is one of my favorite spots for thrifting),
• the AIDS Institute, and the
• AIDS Partnership.

But none of those is more deserving of your help than the Francis House which provides “a safe place for people to come and experience a positive environment that is conducive to helping individuals help themselves. All services are free and confidential… One unique aspect of Francis House is that we offer programs for the entire family and not just the HIV / AIDS infected individual.” They “never lose sight of the big picture that people need the human touch.” Francis House “was founded in Tampa, Florida, in 1990 by Sister Anne Dougherty of the Franciscan Sisters of Allegheny.”

Please give to them generously of your time and/or money. Donations to Francis House are Tax Deductible.