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The seizures began when Tony was 3. After an initial diagnosis of epilepsy, Mike Graglia learned the next year that what his son has is a rare disease called Syngap that affects about 200 people in the U.S. Named for the SYNGAP1 gene, the disease affects brain development and produces epilepsy, autism, intellectual disability and a range of life-long developmental disabilities.

For Tony, the primary concern was controlling the seizures, so Tony’s neurologists prescribed Lamictal and then Onfi, a benzodiazepine. The side effects were “horrendous,” Mike says.

“We got a 40% seizure reduction and a 100% Tony reduction,” Mike remembers. “I get choked up just thinking about it.”

Discussion with the neurologist ensued. Mike started investigating hemp-based medicines, starting with Charlotte’s Web, the CBD extract.  Then, Mike and his wife, Ashley Evans, put Tony on a keto diet, which helps control epilepsy in some patients, but Tony’s seizures were still not under control.

A few months later, they got the genetic diagnosis, which had the benefit of connecting them with a community of other SYNGAP1 parents.

“You feel like you’re no longer losing your mind, once you find people who know what you’re talking about,” Mike recalls. “That connected me to a new friend with a decade-older son with SYNGAP1.”

The friend was treating his son successfully using a CBD medicine called Jayden’s Juice that has a small proportion of THC. He told Mike to just try it, so Mike drove the 90 miles to Modesto to get a couple of bottles.

“By the grace of God, it worked,” says Mike. “That tiny bit of THC was really game changing.”

The neurologist was supportive, or at least failed to oppose it.  Mike’s wife was reluctant, but when they went back to the doctor and got another EEG, they could see it was working. From then on, the 20:1 CBD:THC extract was the medicine they used.

Tony receives his care primarily at Stanford, and when he has been hospitalized there, Mike and Ashley just had to sign a form for Tony to receive his CBD.

School in Palo Alto was similar, at least at first. Tony is 7 now but about a year behind developmentally, so last year was kindergarten. The district provides great  special needs support, and when they returned to in-person instruction, a note from Tony’s doctor was all they needed to ensure he got his medicine at 11am every day.

That changed this summer when Tony started summer school at a different campus. It was the same district, but on the first day of class, suddenly there was a problem.

“’Oh no, no. This is cannabis,’ they said. ‘This is not allowed. You can’t give this to us,” Mike recalls. “They told me, ‘you have to come back every day at 11 and take your son off campus to give it to him.”

That evening, a Monday, Mike called Jason David, the parent of a child with seizures who makes Tony’s medicine. He gave Mike the contact info for Jana Harris Adams, who had won a court ruling that her northern California school district needed to administer her kindergarten-age daughter cannabis medicine as needed to control her seizures. By Wednesday, Mike had the 2018 court ruling and had contacted her attorney, Joe Rogoway.

“I emailed the school district’s nurse the ruling on Wednesday saying my lawyer needs to talk to your lawyer and said: ‘Please confirm, in writing, that for an epileptic child — who is also autistic and has at times eloped without warning — to get his medicine, the policy of PAUSD is to remove him for a safe and supervised environment, walk him to a sidewalk — next to traffic — and have meds administered there,’” Mike says. “The next day, they wrote back that it was actually fine -- just bring Tony’s medicine and the necessary forms.”

The only thing that changed from Monday to Thursday was that a determined parent pushed back. Fortunately for Tony, his father was not just determined but experienced as an advocate.

After Tony’s diagnosis, Mike and Ashley founded the SynGAP Research Fund to advocate for others with this rare disease. After a career supporting the work of philanthropies and pharma companies, Mike was well equipped to take on the role of managing director of this new nonprofit.

“We’re fortunate,” Mike says. “I was able to leave my job to work on this.”

Mike has devoted himself fulltime to raising awareness and research funds for the hundreds of children affected by SynGap. He also serves on the board of COMBINEDbrain, a rare disease collaborative, but he is not done with the issue of safe access in schools.

“My son is going to be in the school system for at least the next decade, so I’m suddenly passionate about this,” Mike says. “There is no clear policy. We need legislation in California that removes this uncertainty. This shouldn’t depend on risk analysis by a lawyer I’ve never met who doesn’t know my son.”

As of January 2020, California allows parents to give their children oral cannabis medicine, after Gov. Gavin Newsom signed into law SB 1127, known as “Jojo's Act.” School nurses administer all other needed medicines to students in public schools.

This profile was originally published in the July 2021 ASA Activist Newsletter