When Brittany Stineman set out to fund research into a gene therapy for SMARD, a progressive genetic motor neuron disease afflicting her son Nash, she took a bit of inspiration from a condition to which it is often compared.
SMARD, spinal muscular atrophy with respiratory distress, is an ultra-rare disorder for which there is no treatment or cure. There are about 60 known cases of living patients with the condition today. Despite its name, the condition is not a form of spinal muscular atrophy. Patients suffer muscle weakness and atrophy that makes it difficult for them to eat or breathe. Many at a few months of age require the use of a ventilator. Though the severity of the condition varies from patient to patient, most patients are expected to live for little more than a year.
There is some reason to suspect the disease often goes undetected. In about half of the cases, children with SMARD have a sibling who died of sudden infant death syndrome, or SIDS, suggesting the unexplained death may have resulted from an undiagnosed case of SMARD.
SmashSMARD, the organization Stineman and her husband Bobby founded in December 2018, has launched a fundraising campaign to support research. The Nationwide Children’s Hospital in Columbus, Ohio is working in partnership with the University of Milan in Italy to finish preclinical work on a potential gene therapy for the condition. If all goes well, a clinical trial could begin in 2020.
The group hopes to raise $1.5 million for the cause. But it’s by no means a pie-in-the-sky effort. In fact, to be precise, it’s a pie-in-the-face effort.
SMARD is often referred to as infantile ALS, a reference to the neurodegenerative condition also known as Lou Gehrig’s disease. That got Stineman and her husband thinking. In a nod to the ALS Ice Bucket Challenge, the viral video campaign that raised more than $115 million for the ALS Association, SmashSMARD hit upon what they hoped would become a viral campaign too.
Playing on their organization’s name, they are hoping that people will be willing to have a pie smashed in their face in the name of a good cause (and write a check in the process). As with the Ice Bucket Challenge, each person participating in the #smashSMARD challenge is being asked to use their cellphones to make a video of themselves getting hit in the face with a pie. The campaign began with Stineman’s family posting a video at the end of February on Rare Disease Day with Stineman and her husband both taking a pie to the face.
The Stineman Family
The organization is learning along the way. Early on, some people didn’t realize that part of the idea here was to raise both awareness and money for SMARD. The organization has posted a few simple guidelines for participants. This includes having the poster explain what SMARD is, why it matters to them, nominating three to five other people to take part in the challenge, and make a donation of at least $1.
“It’s a call to action. It is smashing pies and all that, but really it is a call for people to do something about it,” said Jessica Howell, the mother of a child with SMARD. “We started with family and friends to think about everyone we know with some influence. If everyone who watches it just donates a dollar, we’d have all of our money raised in a short time.”
In a couple of months, the organization has raised more than 10 percent of its total goal. Its hoping to see that accelerate and is working to attract some high-profile participants. It hasn’t been easy, though.
“Because of the severity and how rare the disease is, our fundraising has been challenging. We have 60 patients who are living, and we have a lot of parents who are overwhelmed by the day-to-day care of these children,” said Stineman. “It is grueling to care for some of these kids. Trying to fundraise has been a bit of a mountain for us because of how small the disease is, and we don’t have support from outside organizations.”
Early on, the challenge was featured on the Chicago-area morning television program Windy City LIVE with co-host Ryan Ciaverini getting pied by co-host Val Warner. Other local news shows have covered the challenge climaxing in a pie being smashed in someone’s face. SmashSMARD also won the participation of Matthew Berry, host of The Fantasy Show on ESPN+.
“There are a lot more people who are aware of this disease than they were three months ago,” Stineman said. “That gives me a lot of hope.”
Photo: Brittany Stineman, founder of SmashSMARD