Thephiladelphiacitizen

Citizen Recommends: HoneyBash for Aneurysm Research Gala

G.Perez27 min ago

So, a couple of years ago, something went haywire in my brain. I'd had an ear infection that wouldn't go away. My doc — you might know him as Dr. Mike from his boisterous stints on Fox29 News and Preston & Steve — is usually a kind of frustrated stand-up comic. Once, I was bent over while he, uh, checked my PSA, and he whispered in my ear: "This a bad time to tell ya I love ya?" giggling to himself all the while.

At the same time, he's deadly serious about ordering boatloads of tests, so when he said about my ear infection, "I'm sure it's nothing, but let's get an MRI just in case" — I almost blew off the appointment. Turned out, I had a totally unrelated brain aneurysm, one that was damn close to rupturing. Forty percent chance of fatality, in that event. (Who's loving whom now, Dr. Mike?)

In short order, that led me to Dr. Jan-Karl Burkhardt at Penn, the LeBron James of aneurysm fixers. You might think you want your surgeons to be swashbuckling gunslingers. ("What's the difference between God and a surgeon?" goes the old joke. "God doesn't think he's a surgeon.") But Burkhardt is this unassuming Zen master whose steadiness of hand matches his demeanor. "You spend all this time in the brain," I once asked him. "Do you have any insight into what consciousness is?"

He looked at me, bemused. "No, I'm really just a carpenter," he said — stopping just shy of calling me "grasshopper," I suspect. "I'm fixing a shelf for you."

And fix he did, in this bizarre procedure — catheter through the groin to the brain, wayward blood vessel occluded, web embolization device secured, life saved, home the next day. And, yes, the pedigree is LeBron-like: Burkhardt studied under elite tutelage, (legendary vascular surgeon Dr. Michael Lawton ), just as James received the best coaching a prodigy could procure, and he found himself "fascinated by blood vessels" in the same way James fixated on the physics of the jumpshot.

Apologies for torturing the hoops analogy, but in his NBA season, LeBron told me in the pages of GQ magazine that "I don't want to sound cocky when I say this, but it's like I see things before they happen ... If I'm on the court and I throw a pass, the ball that I've thrown will lead my teammate right where he needs to go, before he even knows that that's the right place to go to. I just slow things down to a point where I can control what happens."

Now hear Burkhardt respond when I ask him to dissect skillset. "There's anatomical knowledge, which you learn," he says. "There's technique, which comes with training. But really it's all about your ability to stay calm in the worst moments. For whatever reason, I can remain calm during a severe hemorrhage." It's almost like he slows things down to a point where he can control what happens.

Through Burkhardt, I not only got more years, but an education. He introduced me to Erin Kreszl and Christine Kondra, sisters who founded the Bee Foundation for Brain Aneurysm Prevention . Before we get to their story (which The Citizen wrote about back in 2019), here's hoping you'll join me, them and the aforementioned Dr. LeBron at their annual HoneyBash Gala November 2 at the Pump House — a cool new event space in Bala Cynwyd — for a night that brings together the leading lights in brain aneurysm identification, treatment and recovery.

A rupture every 18 minutes

Yes, this is personal to me, but I'd also like to think I'd be on this team even if my head hadn't almost exploded. Because here's the thing: Save for the heroic efforts of these two local women, there's hardly any research being done into this disease, and it's a viciously indiscriminate killer.

Get this: One in of you are walking around with a brain aneurysm — a ballooning cerebral blood vessel — and there are roughly 30,000 ruptures a year. That's a rupture every 18 minutes. Kreszl and Kondra founded the Bee Foundation in 2014, and they've raised over $4 million — no mean feat, given that the government invests merely $20 million per year into aneurysm research. That's, like, $3 per person affected.

They've built the nation's second-largest foundation, underwriting studies of biomarker testing — how cool would it be if a blood test could tell you you had a bulging vessel? — and explorations of genetic connections. And they've morphed into lobbyists, stalking the halls of Congress. Their bill — "Ellie's Law," named for a 14-year-old girl and four women who tragically lost their lives to ruptured aneurysms — has been pushed by, among others, Republican Rep. Brian Fitzpatrick, and would secure $10 million in federal funds over the next five years.

Like most driven changemakers, their cause is personal to Krezel and Kondra. On Christmas Day 2013, their cousin, 27-year-old Jenny Sedney, collapsed and died of a rupture. She's one of the women named in Ellie's Law. Jenny's love of all things Bee inspired the foundation's name and ethos.

"Everything that could go wrong went wrong in our case, and our story is the norm," Kreszl recalled last week. While experiencing the "worst headache of her life" — a telltale sign of rupture — a doctor told Jenny it was likely just another bad migraine. Ultimately, the EMTs worked on Jenny for 45 minutes, but didn't even know exactly what they were treating. "Unless you're at a Center of Excellence, the training is lacking," says Kreszl.

When not accosting members of Congress or raising money for research, Kondra owns Cornerstone Bistro in Wayne, which has turned into a type of clubhouse for the aneurysm aware. "Never did we think that the restaurant would be an outlet," she says. "There are people that come from all over to share their story. They'll read a piece on us posted in the bathroom and grown men in tears will come out and say, 'I lost my my best friend' or 'I lost my fraternity brother.'"

When your check comes at Cornerstone? You can donate to the cause. Leather-bound books abound, so those who have suddenly lost loved ones to this most quick-strike of a disease can pen tributes. Did you know that something like 80 percent of federal health research funding goes to the big three? Diabetes, heart disease and cancer. The brain aneurysm story tends toward lack; lack of time upon rupture, lack of awareness, lack of funding, lack of community for those left behind.

At the Gala, there will be no lack. Just common cause, and a kind of joyful solemnity, a feeling I know intimately. "Boy, you were lucky," Kreszl said when I told her of Dr. Mike's intuitive ordering of my MRI. (Usually, MR, not MRIs, are best at detecting aneurysm).

Don't I know it. Every day my wife, Bet, and I go for these walks — because, in the two weeks between diagnosis and when Dr. LeBron could work his jujitsu, Dr. Mike warned me to make no sudden movements, lest I jar a rupture. So the only thing we'd do is take a very gingerly walk at 5pm. I never looked forward to something more. It was — and remains — the most intimate undertaking my wife and I have ever shared. Then, because of the mortal stakes. Now, because of the gratitude and grace.

Honey Bash Gala.
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