Honoring Epilepsy Awareness Month with An Important Action Step

In 2003, Congress formally recognized November as Epilepsy Awareness Month. There are hundreds of epilepsy-focused nonprofit organizations across the country, including 50 chapters of the Epilepsy Foundation, and many others worldwide. Every November I’m uplifted by the stirring stories I find about people dedicating their time and hearts to raise money for epilepsy awareness/research activities. From Evansville, Indiana to Tulsa, Oklahoma, to Chattanooga Tennessee and beyond, there are already dozens of happenings posted online, with many more to come.

My favorite story this year is about the six students from Troy, Michigan who launched Project Synara, an epilepsy awareness nonprofit, whose website provides resources, personal stories, and background information about epilepsy.  The students behind Project Synara were inspired to launch it after speaking with a friend whose sister has epilepsy. According to student organizer, Zana Berishaj, “Her sister, who…recently had an epileptic seizure, was really frustrated that people were being judgmental toward her, whether it be ignoring her in classes and at school, or just in general not treating her as equal but as somebody inferior. We thought… what better way for students to help than to help somebody in our community break that stigma while raising awareness?”

I recall the day I had a tonic clonic seizure (aka grand mal) in my junior high school’s hallway. One minute somebody was holding a hand before my face asking how many fingers I saw. The next thing I remember was waking up at the local hospital hours later, the nurse reporting that my mother was on her way there.  This was the first tonic clonic seizure I’d had in years—I shuddered to think about what my seventh-grade friends were thinking about me, my embarrassment exacerbated, when I realized I’d wet my pants during the seizure.  Later, I learned that my friends had stopped by my home to check on me. I was sleeping off the effects of that seizure, so I didn’t see them. But their visit signaled compassion rather than ostracization, which was a relief. Remembering this humiliation and anxiety filled day (which is included in my memoir, Seizing Control), I was thrilled to read about Zana and her team going to bat for their friend’s sister.

 Zana and her friends live in Michigan. Like my  home state of Massachusetts, Michigan is currently considering Seizure Safe Schools legislation. In Michigan, a Seizure Safe Schools Act was introduced to the state legislature over the summer, where it is under consideration by both the House and Senate.  In Massachusetts, our Seizure Safe Schools Act is further along. Since I blogged about it in August, the bill was passed by the Joint Education Committee in September. Currently under consideration by the House Committee on Ways and Means, the bill has a slightly different name and a new number: An Act Relating to Seizure Disorders in Schools, H4641. While it’s very exciting that the Seizure Safe Schools Act was approved by the Joint Education Committee, passage in the House Committee on Ways and Means is the next hurdle to overcome. When I contacted my Senator, Pat Jehlen, she explained that this was a significant undertaking and there would be other votes required before the bill becomes a law.

As we acknowledge Epilepsy Awareness month let’s celebrate Zana and Project Synara’s efforts to destigmatize epilepsy, as well as the Seizure Safe Schools Act’s passage in the Massachusetts Joint Education Committee. But An Act Relating to Seizure Disorders in Schools, H4641 is still just a bill, making its way to the finish line. We can also recognize Epilepsy Awareness month with this important action step: Pressure from constituents keeps bills on legislators’ radar. If you live in Massachusetts, please contact the House Committee on Ways and Means Chair, Aaron Michlewitz, Aaron.M.Michlewitz@mahouse.gov and Vice Chair, Ann Margaret Ferrante, Ann-Margaret.Ferrante@mahouse.gov and ask them to support the bill and move it favorably out of the House Committee on Ways and Means. Be sure to include the formal title of the bill and the bill number:  An Act Relating to Seizure Disorders in Schools, H4641.