Grace Sourapas was a beauty queen, a vibrant woman whose life revolved around her family. The Southern California native was always on the go, first raising her six kids, then playing a role in the lives of her grandchildren and great-grandchildren.
When she started slowing down, it was more than just age that kept her from her busy life. It took several doctors to finally pinpoint the diagnosis: Multiple system Atrophy.
The past six years have been a nightmare, said granddaughter Ashley Sourapas. MSA has completely crippled Grace, reducing her to a whisper of her former self.
“Much of the medical field doesn’t know about (MSA),” Ashley said. “The numbers would be higher but people are being misdiagnosed when they really have MSA.”
Without a celebrity to raise awareness, the 23-year-old University of La Verne student has taken up the mantle to draw attention to research and support of the families of people diagnosed with MSA.
For her senior project, Ashley has created Saving Grace for family members and victims to connect and share vital information on their own experiences about medical professionals, in-home care and daily strides and struggles, according to the website.
“My goal is to spread awareness and to support families and caregivers because you get bounced around from doctors and you might not be sure how to go about it,” she said.
The public relations and affairs major wanted to use her senior project not just as a platform for awareness, but also to raise funds for researching a cure.
“For the project I had to do something PR-based and this is something I’ve had a dream of doing, of spreading awareness for my grandmother,” Ashley said.
“It’s a perfect marriage of something I’ve wanted to do and something I needed to do.”
Saving Grace will have a Cocktails for a Cause event from 7 to 10 p.m. Friday, March 30, at Chase’s Bar and Bistro in downtown La Verne, 2136 third St. Twenty percent of the proceeds will be donated to MSA research, Ashley said.
Increasing exposure
Saving Grace also teamed up with Tim’s Shoe, a one-time prank that turned into a globe-trotting champion for MSA awareness.
A Facebook page tracks the travels of a Nike shoe festooned with ribbons, buttons and other mementos.
As a host of Tim’s Shoe, daily photographs are taken with local landmarks and posted on the page.
The shoe also travels with a journal, where hosts can write an entry about their own efforts to raise awareness and the struggle of living with or having a loved one with MSA.
The city of La Verne also issued a proclamation, declaring March as MSA Awareness Month.
Toll of disease
For her part, Ashley says that watching her grandmother Grace struggle with the disease has been difficult for her family.
“My grandmother can’t do anything, it’s crippled everything,” she said. “She gets dementia and sees things that aren’t there, it’s basically a worst nightmare of a disease.”
Multiple system Atrophy is a neurodegenerative disorder that affects multiple body systems, according to MSAawareness.org. Patients are commonly misdiagnosed with Parkinson’s disease, which is much more common but has significant differences, said Dr. Jack Florin of Fullerton Neurology, the doctor who first diagnosed Grace with MSA.
Symptoms of MSA often include a slowness of movement, inability to speak loudly, bladder problems and dizziness or fainting while standing. Where Parkinson’s patients have pronounced tremors, though, MSA patients typically do not, Florin said.
“All patients who have (Parkinson’s) respond to levodopa,” a drug used to treat movement disorders, the doctor said. “Most patients with MSA do not, or the response is partial and short-lived.”
Primarily affecting people in middle age, there are no known hereditary factors and no approved medical treatment to slow or cure the disease. The average course of the disease has been tracked at about 10 years.
“You can only treat symptoms and only in a limited way,” Florin said. “There’s medications that can help, physical therapy can help but later in the course nothing really helps.”
“It’s heart-wrenching to be around my grandma and grandpa,” Ashley said. “She is ready to go, she says, `it’s just a disease,’ but my grandpa is devastated and still looking for a cure.”
For more information about Saving Grace or the Cocktails for a Cause event on Friday, March 30, click here or send email to .
626-962-8811, ext. 2472