NARRAGANSETT – At the 48th annual Blessing of the Fleet road race on July 26, a team of 20 runners and walkers will sport bibs and hats in support of the KeepSmilin4Abbie Foundation, a non-profit organization funding research to put an end to anaphylaxis. The organization was founded by Stephen and Amy Benford after losing their daughter, Abbie, to a severe anaphylactic reaction to a food allergy in 2013, days before her 16th birthday.
The race participants were organized by local resident Polly Lehourites, a family friend of the Benfords, who rallied volunteers together to complete the 10-mile event. For the past five years, the Benfords have organized runners to represent the KeepSmilin4Abbie Foundation at the Boston Marathon. With strong ties to South County, the family, residents of Hopkinton, MA, wanted to expand fundraising efforts to area races and events.
“Polly came up with the idea to do the Blessing of the Fleet,” said Stephen. “Amy took it up and said ‘why not?’ It was all Amy, she said we should go for it.”
With two or three runners in support of the KeepSmilin4Abbie Foundation, named after Abbie’s Twitter handle, “AlwaysSmilin’,” at the Boston Marathon each year, the Benford’s expectations for the Blessing of the Fleet participation were modest, but quickly exceeded.
“Polly went out and recruited 20 participants,” said Stephen. “It’s been an amazing, organic initiative.”
“She would update me daily saying she had another runner, then another, and another,” said Amy. “It was unbelievable.”
Before the recruitment process began, the Benfords set a fundraising goal of $200 per runner, or $4,000 for 20 runners. To date, the participants, through individual crowd-sourcing campaigns, have raised almost $8,000 for the organization.
“We’re really talking about a significant number of individual contributions at an average of about $25 each,” Stephen said. “Some are $10, a couple are $5, one is larger, but this is really been an amazing surprise for us.”
Diagnosed with multiple food allergies, some life threatening, as a toddler, Abbie’s conditions were constantly kept in mind by the Benfords. The family cooked separate meals, did hours of research on different and developing kinds of food allergies and carried an EpiPen everywhere. None of it mattered, however, when Abbie began to complain of a minor ailment while getting ready to celebrate her 16th birthday in Boston with friends and family in December of 2013.
“Abbie’s first complaint that day was indigestion,” said Amy. “You’re not going to give someone an EpiPen for indigestion.”
A short time after, a friend came downstairs in the Benford home and said Abbie needed help.
“It rapidly accelerated,” said Stephen.
Abbie, also a lifelong asthmatic, was having trouble breathing and requested her inhaler. Within minutes, she was suffering respiratory failure and entered cardiac arrest - Abbie was suffering an extreme allergic reaction to something she ate earlier.
“Things started to decline very quickly,” said Amy. “When you have a very serious anaphylactic reaction, there’s many things happening on the inside that are not physical, that are invisible to the naked eye - the drop in blood pressure, chemicals and histamines being released into the blood - all things that, had we been able to see them, could have been treated more effectively.”
After CPR, other resuscitation efforts and remaining on life support for four days, Abbie died on Dec. 18, 2013.
The unimaginable circumstance nearly crippled the Benfords, but miraculously, Stephen and Amy managed to mine positivity from the loss.
“We didn’t know what to do,” said Stephen. “We had tremendous outpouring of support from friends, family and the local community. Some of that was money and we didn’t really know what to do with it. So we thought about forming a foundation to put the money toward something positive.”
KeepSmilin4Abbie was founded about a month after the teenager’s death. With a focus on fundraising to aid research efforts, the non-profit organization engaged several means of working to eradicate anaphylaxis literally in Abbie’s name, including a project at Harvard University’s Wyss Institute, where world-leading researchers are currently working on a number of initiatives they call “Project Abbie” that could have saved her life. The foundation and the research institute were connected by Boston Children’s Hospital staff physician Dr. Benjamin Matthews, who treated Abbie after she was rushed to the hospital.
“We liked that idea,” said Stephen. “The idea of putting together a research project that could possibly create something that could have saved Abbie’s life is very compelling to us. We were very serious about doing something that mattered and not making posters. There’s a lot of great awareness organizations out there, but we had those posters on our refrigerator, we had the notifications and symptoms cards and we missed the symptoms. We consider ourselves a well-informed family, and we missed the symptoms.”
In that effort, The Wyss Institute has developed a redesign of the EpiPen to deliver epinephrine in a near-automated fashion. With the redesign, a manual needle injection is no longer required, and the patient can simply press the EpiPen against the thigh to trigger the epinephrine delivery. The new EpiPen also comes with an accompanying mobile application that allows users to activate the injection through the app and the capability to alert a parent or caretaker via text message that epinephrine has been administered.
But that’s not all. The researchers at The Wyss Institute have also developed sensors to detect the body’s histamine levels, compounds emitted cells in the event of an injury or allergic reaction. The focus on monitoring histamine levels represents a significant possibility for future research and product development.
“They’ve done a lot of work, they’ve made a lot of progress,” said Stephen. “Histamine is a marker for anaphylaxis. As anaphylaxis progresses, histamine levels in the blood rise fast. The people at The Wyss Institute have focused in on histamine as a marker for anaphylaxis.”
The hope is that the device, simply a small chip, will be able to alert the user that an allergic reaction is taking place, or if another, less threatening occurrence, such as a seasonal cold, is to blame for any symptoms being suffered. When activated via small prick of the finger, the chip would be the first-ever means of detecting an allergic reaction, and, when combined with the automated epinephrine injection, could provide a small, wearable counter to anaphylaxis.
To date, KeepSmilin4Abbie has donated over $100,000 to fund the research happening at The Wyss Institute. Participants running and walking the Blessing of the Fleet race on behalf of the organization are raising money to continue that work and similar efforts by the nonprofit and its various partnerships. The Benfords said the Blessing of the Fleet team, which consists of both family friends and complete strangers, has demonstrated immense support.
“It’s incredible to see people take time out of their life for this organization,” said Amy. “From the get-go, the mission was always to have Abbie be remembered and create a device that could save lives in her name. It brings us a lot of peace and it really is indescribable to see our friends, family and people we don’t know share that vision. It’s incredible.”
Recent studies indicate that about 30 million Americans are at risk of suffering from anaphylaxis. To donate to the KeepSmilin4Abbie Blessing of the Fleet race team, please visit crowdrise.com/o/en/campaign/blessing-of-the-fleet-narragansett-rhode-island/keepsmilin4abbiefoundation. To learn more about The KeepSmilin4Abbie Foundation, please visit keepsmilin4abbie.org.