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Raising Awareness and Money for CCSVI

Northford's Jennine (Miller) Kelley is helping organize a classic car show fundraiser for the Chronic Cerebrospinal Venous Insufficiency Alliance, which looks at multiple sclerosis in a "completely different way."

Six years ago Jennine (Miller) Kelley’s world was turned upside down after she had been experiencing debilitating headaches and a loss of balance. As an audiologist, Kelley knew her balance problem wasn’t originating in her ear.

“A couple weeks later, I lost the ability to talk and couldn’t use my right hand,” said Kelley, a North Branford High School graduate who still lives in Northford with her family.

After a battery of tests over the next month, she was finally diagnosed with multiple sclerosis (MS). Though it took some time for her diagnosis to sink in, she eventually began researching her condition.

Looking at MS in a Different Way

In 2008, Kelley came across research on Chronic Cerebrospinal Venous Insufficiency (CCSVI) which “looked at MS in a completely different way.”

“The traditional way of looking at MS is that it’s autoimmune, but this was looking at it as vascular,” said Kelley. “The research has shown there are blockages in the veins that drain your brain or spine. It keeps refluxing back into the brain and eventually causes plaques and you lose neurological function.”

Kelley and several others eventually found doctors who would perform treatments to open their veins. She had the procedure done in 2010 and though, two years later, doctors confirmed her veins had recollapsed, she saw the benefits.

“I felt immediate relief after the procedure but now the MS is progressing,” said Kelley. I don’t have symptoms, but my MRI shows progress.”

Through her online research, Kelley met several others suffering from MS and they formed the CCSVI Alliance, which according to its website, “promotes education and research about CCSVI and its relationship to Multiple Sclerosis (MS) by providing objective information to the MS community, supporting medical investigations of CCSVI, and fostering collaboration among patients, advocates, and professionals.”

Kelley, who is married with two children, no longer sits on the board of the Alliance, but she is still active and helps in any way she can.

Classic Cars to Help the Cause

Ever since Kelley was diagnosed with MS, her father, who she says is a “big car guy” has offered to help organize a car show fundraiser for MS. This year she finally said yes.

Opening Minds for CCSVI - Cruisin for Multiple Sclerosis will be held on Saturday, Sept. 8 (rain date of Sunday, Sept. 9) from noon to 6 p.m. at Honeywell in Northford.

“It’s not just for classic cars, which will be there, but there will also be motorcycles, modern muscle cars and more,” said Kelley. “The state police are also bringing a rollover vehicle and Trailer Depot will have a display, too.”

Of course there will be a booth with information on CCSVI for those interested. The North Branford Fire Department will be on hand selling hot dogs, hamburgers and drinks. There will also be vendors with ice cream and other snacks.

In addition to checking out the cool cars, spectators will also enjoy music by DJ Frankie B, door prizes and raffles.

“We’ve had so many donations from the community,” said Kelley. “Whether it’s donating something, attending the event or volunteering to help out, the community has been amazing.”

What You Need to Know 

What: Opening Minds for CCSVI - Cruisin for Multiple Sclerosis
When:
Where: Honeywell Life Safety, 12 Clintonville Road, Northford
Cost: $10 to show a car, $5 for spectators
Donate Online 

Lori Ann Acosta September 02, 2012 at 12:25 PM
Does medicare cover this procedure? I have tried everything. I'm wondering if this is something I could try.

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