CEDAR FALLS — The magnitude of the progress Kendall Maslak has made in a year of being seizure-free makes it tempting to use the cliche that words can’t describe it.
But, in fact, her success is most apparent in her use of words.
A year ago, Kendall could not read. She could speak but it was difficult to understand for new listeners, and she often kept quiet. She suffered a seizure about every 20 days that led to her delays.
Now, Kendall, 14, shows no hesitation in bursting into song — Katy Perry’s “Roar” — and doesn’t just say the title of her new favorite book but speaks its most famous line, “Rapunzel, Rapunzel, let down your hair.”
Her words are not always entirely clear but she now loves to tell stories and make others laugh. Her self-deprecating sense of humor usually means she talks about that time she banged her elbow or when her teacher cautioned her against doing a handstand at a school dance.
“She’s had a lot of insults to her brain — including the medication, right — so now that she actually has this resting period, it’s just been incredible to see her progression,” said her mother Fadua Maslak at their Cedar Falls home.
While her parents Ed and Fadua Maslak are most happy to report her improved health, Kendall earned an important accolade that would have been unthinkable a year ago.
Kendall will represent Iowa in Washington, D.C., at the Teens Speak Up! program held annually by the Epilepsy Foundation. The Maslaks will head to the nation’s Capitol on April 15.
They will participate in an epilepsy awareness walk, receive advocacy training and then advocate their respective lawmakers on Capitol Hill. Kendall will follow up her visit by putting together an advocacy platform.
They have scheduled so far to speak with U.S. Sens. Chuck Grassley and Joni Ernst, both Iowa Republicans, and U.S. Reps. Rod Blum, R-1st District; Dave Loebsack, D-2nd District; and Steve King, R-4th District.
This opportunity will be one of the Maslaks’ first forays into advocating at the federal level. But they have been long-time advocates at the state Capitol, particularly in support of expanding cannabidiol access for medical purposes in Iowa.
They actually got their start working on the federal level by participating in Iowa’s first-in-the-nation caucus process and questioning the presidential candidates on their support for medical marijuana.
As they’ve learned from their activism, there seems to be a kind of pointing fingers at whose responsibility it would be to approve medicinal marijuana.
State lawmakers opposed to changing the law have put the responsibility on the federal government and changes to the U.S. Food and Drug Administration regulations. And Ed Maslak has heard from some of the presidential candidates that it’s a state’s issue.
“Most of the legislators we’ve talked to have been state, so this will be new,” Ed Maslak said. “With any of the hot issues that you have or you want to convey, that’s an opportunity to share it with them and put a name and face to the particular issue.”
Both Blum and Loebsack have co-sponsored the Charlotte’s Web Medical Access Act that would amend the Controlled Substance Act to exclude cannabidiol from the definition of marijuana and from treatment as a controlled substance. U.S. 3rd District Rep. David Young, R-Van Meter, also is a cosponsor on the bill.
Though there is a similar bill in the U.S. Senate, neither Grassley nor Ernst are co-sponsors on the legislation.
But Grassley, who chairs the Senate Judiciary Committee, has been involved in several activities to expand the use of cannabidiol for medical purposes. He supports research on cannabidiol and has successfully pushed agencies to address the barriers to marijuana research and analyze whether cannabidiol should be scheduled separately from the marijuana plant itself.
Ed Maslak notes currently approved epilepsy treatments have some hefty side effects, especially for young children. Kendall is currently finding success with a medication that is classified as a benzodiazepine, which is a psychotropic drug that’s often used as a tranquilizer.
While Kendall said she’s excited for her first trip to Washington, D.C., her voice didn’t convey the kind of enthusiasm as when she started to explain about her most recent trip to Florida. Her parents say that’s normal for her.
“She gets excited on the day, like if we’re going to do something and she knows we’re going to do it, then she’s full on excited, but if I start telling her now, she’s like, ‘Yeah. OK,’” Fadua Maslak said.
In other words, she’s just like plenty of other teenagers.
Correction added 4/11/16: A previous version of this article misstated Kendall's medications. She is not on a clinical trial medication.