By COURTENAY EDELHART, Californian staff writer firstname.lastname@example.org
FIGHTING ALS: Bakersfield attorney Stacy Inman hasn't been back to Washington, D.C., to advocate for ALS patients since 2000. She was too busy caring for her husband, Michael Gagner, who died from it last year at the age of 56.
ALS stands for amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. It's a fatal, progressive neurodegenerative disease that affects the brain, spinal cord and muscles.
Now that she is no longer a caretaker, Inman, 54, was able to join about 500 members and allies of the ALS Association in the capital last week with a three-pronged mission.
First, they wanted to see the MODDERN Cures Act passed. That's an acronym for Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network. In a nutshell, the congressional bill would cut red tape and create incentives to speed up the development of new and better treatments for patients with chronic diseases -- particularly important for rare conditions. Pharmaceutical companies don't like to spend a lot on R&D if the size of the market for a treatment isn't large enough to recoup their expenses.
"About 30,000 people in the United States have ALS at any point in time, but that number is not static," Inman said. "Every 90 minutes, someone is diagnosed with ALS, and every 90 minutes, someone dies from it."
About 10 percent of patients have a hereditary form of ALS. It's not understood why others get it. Oddly, military veterans are about 60 percent more likely than civilians to develop a muscle-wasting disease such as ALS.
That brings us to initiative No. 2, prodding the U.S. Defense Department to at least renew or maybe increase the $7.5 million in grant money set aside this fiscal year for medical research into a possible link between ALS and military service.
Finally, the association wants Congress to keep funding a national registry of ALS patients and their symptoms that among other things is used in medical research.
Inman had appointments with a dozen legislators last week, and said she was generally well-received. Of the 12, four personally knew someone with ALS, "so that made it real for them," Inman said.
Unfortunately, hometown U.S. Reps. Kevin McCarthy, David Valadao and Jim Costa were all busy with the debate on a successor to outgoing Health and Human Services Secretary Kathleen Sebulius, so Inman was only able to meet with their aides.
But she's not done.
"I'm going to go see them at their local offices when they get home," Inman said.
TELEMEDICINE IN TEHACHAPI
The Tehachapi Valley Healthcare District has partnered with Dignity Health Memorial Hospital for a new stroke telemedicine program that will connect Bakersfield doctors with the Tehachapi hospital's ER.
It's critical to get treatment as soon after a stroke as possible. The telemedicine program allows remote doctors to get consultations with board-certified specialists in real time 24 hours a day.
ZUMBA YOUR BUTT OFF
Here's a medical study I'd be thrilled to volunteer for.
A team of researchers led by UC Davis has launched a five-year study designed to reduce the risk of obesity and diabetes among immigrant Latino farmworkers.
The study will include food and nutrition educational programs at the participants' on-farm work sites, as well as exercise activities such as Zumba classes. Fun!
The program will start out on ranches in Salinas and Watsonville, but the ultimate goal is to disseminate the intervention program to farms throughout the country.
FREE MEDICAL INFORMATION
Doctors from Cedars-Sinai Medical Center will hold an Advances in Neurology and Neurosurgery conference 7:30 a.m. to noon June 7 at the Bakersfield Marriott Convention Center, 801 Truxtun Ave.
The conference is designed for patients and their families and is free and open to the public.
Seven experts will speak about how to select your health care team, medical research and treatment options for peripheral neuropathy, stroke, multiple sclerosis, spine disorders, brain tumors and epilepsy, among other topics.
For more information, call 800-233-2771 or visit www.cedars-sinai.edu/neuroconferences.
HEALTHY LUNGS FOR WOMEN
The American Lung Association on Tuesday announced the launch of Lung Force, a new initiative to make lung cancer in women a public health priority, drive policy change and increase research funding.
Lung cancer kills almost twice as many women as any other cancer, including women who have never smoked or have stopped smoking.
As part of this week's launch, the American Lung Association in California is mobilizing a "turquoise takeover" in Kern County.
The historic Beale Clock Tower, Memorial Hospital and the Padre Hotel are illuminated turquoise this week, and the Marketplace in southwest Bakersfield is decorated with turquoise ribbons to raise awareness about Lung Force as well as National Women's Lung Health Week, which began Sunday.
In addition, The Mark is serving signature turquoise cocktails for the entire month of May, and Bakersfield Mayor Harvey Hall will proclaim the second week of May as National Women's Lung Health Week at the Lung Association Respiratory Rally 11 a.m. Thursday in Founders Hall at Memorial Hospital, 420 34th St.
BMH WINS STROKE CARE AWARD
Bakersfield Memorial Hospital's Sarvanand Heart & Stroke Center has been granted the American Heart & Stroke Association's Gold Plus Quality Achievement Award.
Get With the Guidelines-Stroke is an in-hospital program that sets guidelines for improved stroke care. Awards are presented for different levels of quality.