Rockin' LAMstock

Hanging out with 800 screaming teenagers isn't how I normally imagine spending my Tuesday evenings.

But when you throw in six Canadian rock bands performing on an outdoor stage facing a sprawling field sprinkled with girls in tie-dyed shirts on an invitingly warm spring evening with the smell of barbecue in the air, it's really hard not to enjoy the moment. Especially when you know you're there to support research of a rare and fatal lung disease that affects women of child-bearing years – definitely the demographic all of my friends and I fit into; and probably a lot of your friends, too.

The event, quite cheekily titled "LAMstock," was organized by 16-year-old Havergal College student Claire Morse, who decided to throw the rock concert at her school campus after her mother, Catherine Lawrence, was diagnosed with LAM four years ago.

"I knew we wanted to do this with Havergal and I knew it had to be something I was really passionate about otherwise I couldn't spend months and months on it," says Morse. "I love music and that's sort of where this whole Woodstock concert came into play. Plus my mom's a Havergal grad, it's a girl's school, and LAM is a woman's disease. It's really important to raise that awareness so that future doctors in the world know what LAM is."

LAM, which stands for Lymphangioleiomyomatosis, is a multi-system disease that affects the lungs, kidneys, and lymphatics. It behaves a lot like a cancer and is often misdiagnosed as emphysema, asthma, or bronchitis because of its common symptoms like shortness of breath, chest pain, abdominal discomfort, coughing, and collapsed lung.

Because of the lack of research and funding, as well as her obvious vivaciousness and drive to make a change, Lawrence has taken patient empowerment to a new level by organizing a grassroots organization called Green Eggs and LAM to bring together specialists, like Dr. William Stanford at the University of Toronto, to find a solution for a disease that is currently incurable.

"We've already over-achieved with this event," says Lawrence. "More people are talking about LAM. It's on their radar. Spreading awareness was a huge objective and no doubt we'll be sending quite a bit of money directly to the lab. Lots of good things lie ahead in LAM research."

Despite its rareness – although one has to question whether the numbers must be higher be considering it is often misdiagnosed – it still affects 30,000 to 50,000 women worldwide and the extreme female predominance of the disease suggests that LAM is somehow related to hormones or female sexual organs. It also targets women as young as 17-years-old.

"For those of us who don't have the time to wait, we're hopeful there's something out there for us," says Lawrence.

Money raised from the concert, as well as through the Green Eggs and LAM group, goes towards funding stem cell research, specifically helping to develop a system where there’s easy access to LAM cell culture for the purpose of testing the effect of new drugs.

"The tough thing with a parent being diagnosed with a deadly disease like LAM is that you can't really see the physical effects of it," says Morse. "It's something that's easier to be repressed. But I think it's so important that people do something to feel like they aren't helpless. You don't have to go far away to find challenges and obstacles. Sometimes you can be most passionate about what's right at home in your own backyard. That's what this is all about."

Images courtesy Havergal College.