SEASIDE PARK – It was a bright and chilly Sunday morning as hundreds of runners and walkers gathered near Park Pavilion on the Seaside Park Boardwalk, ready to stretch their legs for a cause.
Kristen’s Legacy of Love, now in its fourth year, is a 5K run and 1 mile walk that honors Toms River native Kristen Shafer Englert, who passed away in 2013 as a result of a brain aneurysm just weeks after giving birth to her first child.
Kristen’s family was left shocked by her death and immediately sprang into action looking for a way to both honor her life and raise awareness about the silent danger of brain aneurysms. They applied for a research grant through the nonprofit Brain Aneurysm Foundation. The grant would provide scientific research directed at early detection, improved treatment methods and technological advances to improve outcomes for patients with brain aneurysms.
According to the foundation, 1 in 50 people are living with an unruptured brain aneurysm.
Together with the Brain Aneurysm Foundation, the first annual Legacy of Love event was held in May 2014 and brought out over 300 runners and walkers, 16 corporate sponsors and countless volunteers. Most importantly, the event raised $20,000 and was able to form the Kristen’s Legacy of Love Chair of Research, a grant that was awarded to Dr. Gustavo Pradilla, MD, of Emory University.
Each year, money raised from the run is awarded to another researcher at the Brain Aneurysm Foundation’s Annual Research Symposium.
This year’s Legacy of Love was no exception. Speaking at the event, Kristen’s mother Kathy Shafer said, “This is the fourth year that we’re gathering together to support education, awareness, intervention and prevention of brain aneurysms. Our daughter Kristen died at 25 years old and it was a tragedy and it should have never happened, but going forward, we’ve decided that we all need to come together to find a cause and fight for it. So if you don’t find a cause, it will find you.”
In addition to people walking and running in the annual event, 15 teams also joined up to raise money together. The highest team amount of $2,180 was raised by The Goddard School, where Kristen worked.
“Our goal was $20,000 and this morning we were at $21,000 and change and that doesn’t include today’s efforts, which I know are big,” said Shafer.
Behind the scenes at the Brain Aneurysm Foundation is Christine Buckley, who is gearing up to award this year’s grants. She said when the foundation started giving out grants back in 2006, they awarded two for $10,000 each. Now, they’re able to make a much bigger impact – last year awarding $310,000. Almost a third of the organization’s overall revenue goes straight back into these Chairs of Research.
The Brain Aneurysm Foundation currently has 11 other Chairs of Research, most of which were created in honor of people like Kristen, who passed away from brain aneurysms. Buckley said she tries to pair families with doctors geographically, so they can learn about a lost loved one’s story before they begin their research.
Although the grant money and studies help, brain aneurysm research at a national level remains highly underfunded.
“Right now the government spends 83 cents on it per person, per year,” said Buckley.
Shafer has been involved in advocacy on Capitol Hill over the past few years and talked about a bill that was recently referred to the Subcommittee on Health called Ellie’s Law, named for a 14-year-old North Carolina girl who died of a brain aneurysm in 2014.
“What it’s asking for is $5 million dollars to promote education and research in brain aneurysms,” said Shafer.
The money would be designated for the National Institute of Neurological Disorders and Stroke. There are currently four people’s names on the bill, including Ellie’s, and she said they hope to add a fifth name – Kristen Shafer Englert’s.
Other families who have lost their loved ones to brain aneurysms have joined the Legacy of Love event over the years, too. The Santiago family from Jackson has been running and walking to remember Joey Santiago, whom they lost in 2010, for the past four years and the Saliski family has been participating in honor of Matt for the past two years.
Kristen’s family hopes the Legacy of Love event will attract more families every year to both carry on Kristen’s memory and fight for more research and awareness of brain aneurysms.
For more information about the Brain Aneurysm Foundation, visit bafound.org.