3:41 p.m.: A dreaded disease in her family, Corona woman battles to help find cure for ALS
By Liset Márquez, staff writer
Article Created: 03/27/2008 03:47:09 PM PDT


CORONA - Having lost her mother, brother and cousin to amyotrophic lateral sclerosis, Laura Stanley is in constant agony over which family member might next be diagnosed with ALS, commonly known as Lou Gehrig's disease.
Dating back to the early 1900s, Stanley said she has had more than 30 family members die because of the disease.

"I know I am I not carrying the gene but every day I live in fear that it's going to be my sister," the 47-year-old Corona resident said.

ALS is a progressive and fatal neurodegenerative disease that attacks the motor neurons in the brain and spinal cord. There is no cure.

Because ALS is so prevalent in her family, Stanley has dedicated the past five years to heighten awareness and educate the community about the disease, traveling to Washington, D.C., to meet with legislators and speaking at local Rotary clubs.

She has been on the ALS Association board, as well as the Muscular Dystrophy Association board. Last year she became an ambassador for the ALS Therapy Development Institute. The institute, based in Cambridge, Mass., is a nonprofit organization with 30 scientists working to find a cure for ALS.

Stanley helped organize Saturday's seminar on ALS in Long Beach and is an institute ambassador.

"She's really an evangelist and definitely a very strong ambassador for us," said Sean Scott, president of Therapy Development Institute.

About 5,000 to 8,000 people are diagnosed annually with ALS. The disease spreads so rapidly that a
person's life span is often less than five years, Scott said.
"It is the thief of dignity disease because mentally, you're aware of everything but you're a prisoner trapped in your own body," Stanley said.

In 1988 she lost her mother Sylvia. In 2005 her brother David and cousin Pavia Wald succumbed to the disease.

She said she still remembers the day when the symptoms started to appear in her brother. "It was Sept. 17, 2003, and I asked him to lift some boxes," she said.

Her brother told her he couldn't move his legs.

"I knew at that minute what he was telling me," she said.

Dealing with the disease has been a roller coaster ride of emotions, Stanley said.

Losing family members has not only taken an emotional toll on her but her daughter as well. Stanley said her brother was like a father figure to her daughter, Sarah, 11.

Every May for the past four years, Stanley and her daughter have traveled to Washington D.C. to speak to Congress about finding a cure for ALS.

Sarah said "it hurts my heart a little" that a cure has not yet been found.

"I don't want to have to watch anymore of my family members die from the disease," she said.

Stanley said she wanted to get involved with the institute because of its commitment to research. More than 80 percent of the funds raised goes to research, she said.

"Their job is to help us get the word out," Scott said of ambassadors who volunteer their time. "Right now there is no government agency or corporation whose responsibility it is to develop a drug to cure ALS."

In her capacity as an ambassador, Scott said Stanley has been very successful, donating her time and effort to educate people.

"Laura's incredibly committed, she isn't just rallying for change, her efforts are drastically important and they have been for us," Scott said.

Later this year, Stanley will organize another fundraiser in Costa Mesa called "Rallying for Research."

"That's my purpose in life," Stanley said. "God has spared my life so that I can fight."

liset.marquez@dailybulletin.com

(909) 483-8556


ALS 101: A seminar and discussion between scientists, ALS patients and the public.

WHEN: 11 a.m.-2 p.m., Saturday.

WHERE: Long Beach Yacht Club, 6201 Appian Way, Long Beach.

INFORMATION: Laura Stanley (951) 277-3487.

Rallying for Research: To volunteer or attend call Laura Stanley (951) 277-3487

http://www.dailybulletin.com/breakingnews/ci_8718887