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Cycling event honors ALS victim
By BOB McCLURE
| Article published on Tuesday, Sept. 15, 2009 |
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![[Image]](/content_images/091509_smb-01.jpg) |
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| Photo courtesy of SHELLY REALE |
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| Roz Jeffrey, left, and her daughter Shelly Reale pose for a photo last year at Christmas. Roz was diagnosed with ALS. |
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SEMINOLE – Three months before Roz Jeffrey was diagnosed with Amyotrophic Lateral Sclerosis, she and her husband were sailing the Greek islands.
Not long after she began to have problems with slurred speech. Doctors diagnosed the active, 66-year-old Gulfport woman with an aggressive form of ALS, or Lou Gehrig’s Disease, for which there is no cure.
That was a year ago. Much to the shock of her husband and three children, she has a short time to live.
But to honor her mother and do something proactive toward fighting ALS, Shelly Reale of Seminole is organizing a cycling event that will raise funds for the ALS Association Florida Chapter.
The inaugural Tour de Vie is set Saturday, Nov. 7, Jeffrey’s birthday, and will feature three cycle events that will begin and end in Walsingham Park. They include a five-mile fun ride, a 25-mile Challenge on the Pinellas Trail and a 100K Century Loop, a 62-mile route that extends south on the Trail to Blossom Lake Park, north to Palm Harbor and back to Walsingham Park.
The registration fee is $35 and participants will be asked to raise a minimum of $150 each.
Interested cyclists should call 888-257-1717 or register online at www.tourdevie.org.
“I’m an avid cyclist myself,” said Reale. “So I went to the ALS Foundation locally and said this is what I want to do and they really got behind it.”
“We’re excited about the Tour because it will be our first chance to reach the cycling community,” said Kamden Kuhn, a spokeswoman for the ALS Association Florida Chapter. “Our goal is (to raise) $50,000. So that’s a big drop in the bucket for us.”
The association's primary fundraiser each year is the Walk to Defeat ALS each spring. Funds raised by the organization are used locally for research and patient care.
ALS is a progressive neurodegenerative disease that affects motor neurons in the brain and spinal cord. When the motor neurons die, a patient’s muscles waste away. Within a short period patients are robbed of the ability to walk, speak, eat and eventually breathe.
There is no cause or cure for ALS.
About 150 residents in the Tampa Bay area are afflicted with the disease and about 1,250 statewide. Nationally, one person is diagnosed with it every 90 minutes and one person dies every 90 minutes.
“The number hasn’t changed much over the years,” said Kuhn, “which makes it hard to raise awareness.”
Reale said the event is more about educating the public about ALS, as well as generating money for a good cause.
“It’s about raising funds but more importantly it’s about raising awareness of ALS,” she said. “Unfortunately, my mother is going to be long gone by the time research is ever done to find a cure.”
Reale said annual care for an ALS patient can range from $200,000 to $250,000 and a good portion of it goes toward a medication that relieves the symptons.
“It’s expensive because there is only one drug that is approved to use,” said Reale. “But it only increases life expectancy by two to three months, plus the side effects are pretty horriffic.”
She said her mother, who was diagnosed with sporatic ALS, first lost her ability to speak and then lost her ability to swallow. She is fed through a tube, still has some mobility and can type with one finger.
“Her mind is still very vital and active,” said Reale. “It is often described as being trapped in a glass coffin.”
Revision: Changed foundation to association.
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Article published on Tuesday, Sept. 15, 2009
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