RIDGEFIELD, Conn. -- Few people realize the alarmingly high number of deaths caused by brain aneurysms. Ridgefield’s Alison Sedney is not only painfully aware of the statistics, she and her family have also made it their mission to do something about it.
- Who : Alison Sedney, Ridgefield
- What : Board member of The Bee Foundation, which is dedicated to raising awareness and increasing funding for preventative research of brain aneurysms
- Coming up: Sunday, Dec. 11, a fundraiser for The Bee Foundation at Gallo in Ridgefield. Click here for info.
Sedney, a director of marketing at Cartus in Danbury, serves on the Board of Directors for The Bee Foundation, a 3-year-old 501(c)3 organization that has already raised more than $500,000 and is dedicated to raising awareness of brain aneurysms and increasing funding for preventative research.
Sedney’s nieces, sisters Christine (Doherty) Kondra and Erin (Doherty) Kreszl, founded the organization in 2014 in the wake of the death of Jennifer Sedney, Alison’s 27-year-old daughter. She died of a ruptured brain aneurysm on Dec. 25, 2013.
The Bee Foundation will host its second annual awareness event on Sunday, Dec. 11, at Gallo Restaurant in Ridgefield. The event runs from 5 to 8 p.m. at Gallo, located at 5 Grove St. There is no admission charge.
There will be guest bartenders and raffle tickets from several Ridgefield businesses, including Cellar XV, Kate Spade, Cucina Casalinga, HooDoo Browns and Adam Broderick, will be available. Click here for more information about the event.
Statistics for deaths caused by brain aneurysms shocked Sedney. One in 50 Americans have an unruptured brain aneurysm, and an estimated 30,000 of those will rupture each year. About 40 percent of those who experience ruptures will die, and about 66 percent will suffer some permanent neurological deficit.
“After Jennifer died, we realized we weren’t the only people who had very little knowledge about this,’’ Sedney said. “Any knowledge most people have is restricted to the idea that brain aneurysms happen to older people. There’s not much awareness of the fact that they can happen to people in the prime of their lives – even as young as their early teens.”
According to the National Institutes of Health , brain aneurysms are slightly more common in women than in men, and occur most frequently between the ages of 30-60. Possible risk factors include hypertension and smoking. However, Sedney said, “In many cases, there are no obvious risk factors. The Bee Foundation is working to change that.”
That was the case with her daughter. A 2004 graduate of Ridgefield High School, Jennifer worked as a healthcare consultant in Philadelphia. She had gotten into running -- she competed in a 3.1-mile race on Thanksgiving, about a month before she died -- and lived a healthy lifestyle.
What’s more, brain aneurysms for the most part lack clearly identifiable symptoms. Jennifer complained of a terrible headache, which, Sedney's family came to understand, is one of the most common symptoms. “People say it’s the worst headache of their life’’ Alison said. “It doesn’t compare to anything else. Still, unless you know what you are dealing with – which we certainly didn’t – it’s easy to write those symptoms off as simply what they appear to be – a very bad headache, even a migraine, rather than a life-threatening situation.” People at risk of harboring brain aneurysms can be identified through non-invasive imaging.
“It’s one of those diseases where people have the feeling that there is nothing that can be done,’’ Alison said. “It’s like a bolt of lightning and when it strikes, you’re gone. That’s not the case. There can be positive outcomes – much more frequently than people realize. But in order to increase those outcomes, we need more awareness and, absolutely, more research.”
In fact, the lack of research was one of the primary issues that Sedney’s nieces, Kondra and Kreszl, discovered as they began to explore establishing a Foundation. . The United States government spends less than 83 cents per person affected. One of The Bee Foundation’s primary objectives is to raise money to fund research efforts. The organization awarded UCLA its first preventative research grant in 2014, and awarded Mount Sinai a grant last year.
They have also joined in lobbying efforts to increase NIH funding into the condition, working with Arnold and Porter, a major Washington D.C. law firm.
The foundation has held awareness events in several other cities around the country. This is the second year Gallo has hosted the Ridgefield event, which supports The Bee Foundation’s fundraising efforts. “There’s no admission fee, and no expenses on the part of the foundation,’’ Sedney said. “Gallo provides a great setting, enabling us to raise funds and build awareness – for example, showing a recent educational video produced by the Foundation. It’s a nice combination of education and fun for a good cause.”
While December is a joyous time for most families, Sedney, her husband and son fight emotional upheaval. A young woman, full of promise, talent and love lost her life at far too young an age. Alison hopes The Bee Foundation can help reduce the likelihood that other families incur the same heartbrokenness.
“The holidays are difficult for anybody in this situation,’’ she said. “Being part of the Foundation has helped me get through it all. I’m fortunate to have nieces with the energy, vision and commitment to have started this, and fortunate that I have a chance to dedicate myself to a cause that will ultimately help other people. If this had happened to a friend of Jennifer’s, she would have been the first person to step up. If there’s one bright light, it is that we are determined to help make a difference in this condition.”
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