All Things Epilepsy by Laura Beretsky

10/16/2025

Today is Sudden Unexpected Death in Epilepsy, or SUDEP Action Day

Here’s an important act for anybody in Massachusetts. The Massachusetts legislature is considering the SUDEP Education Prevention Act. The proposed legislation requires that the Massachusetts Department of Health conduct a statewide campaign to raise public awareness about SUDEP and other epilepsy-related mortalities. The bill also mandates that the Department of Health develop informational resources on SUDEP to share with epilepsy patients, their families and health care providers.

Only 2% of proposed Massachusetts bills get passed into law, but pressure from constituents makes a difference. If you live in Massachusetts, please contact the Joint Committee on Health at JointCommittee.PublicHealth@malegislature.gov and ask them to pass the SUDEP Education Prevention Act. Be sure to include the formal title of the bill and the bill number in the subject heading: An Act Relative to Education and Prevention of Sudden Unexpected Death in Epilepsy and Other Related Epilepsy Mortalities, HB3961. More on my blog: https://lberetsky.substack.com/p/an-important-act-for-sudep-action

09/30/2025

A recent University of Michigan study of pregnant women with epilepsy shows a surprisingly high number don’t seek neurological care during their pregnancies. Pregnancy is complicated, period. Managing epilepsy while being pregnant adds another level of challenges, which should be monitored by a neurologist. More on my blog:

How epilepsy complicates an already complex transformation

09/09/2025

Massachusetts legislature is considering the Seizure Safe Schools Act. The proposed legislation requires that school staff and families collaborate to develop a doctor-approved seizure action plan for how to respond if a child has a seizure at school. The act requires public schools to have at least one staff member trained to treat a child who has a seizure while at school.

Only 2% of proposed Massachusetts bills get passed into law, but pressure from constituents makes a difference. If you live in Massachusetts, please contact the Joint Committee on Education at jointcommittee.education@malegislature.gov and ask them to pass the Seizure Safe Schools Act. Be sure to include the formal title of the bill and the bill numbers: An Act Relating to Seizures Disorders in Schools, HB635 and S422. More on my blog: https://lberetsky.substack.com/p/keep-massachusetts-seizure-safe-schools

07/21/2025

The recently passed Big Beautiful Bill further limits urban access for those of us who can’t drive. More on my Substack:

Recently passed federal legislation further limits urban access for those who can’t drive

06/17/2025

I'm proud to share that my book, Seizing Control won a Coalition of Visionary Resources (aka COVR) Gold Award for best memoir and the Silver Award for best Social Justice book.

05/20/2025

Only 24 states require epilepsy awareness training for public school staff. Massachusetts is currently considering the Seizure-Safe Schools Act, bill H635. If passed, America will be halfway to safe schools for all public schoolchildren with epilepsy. If you live in Massachusetts, contact your senator and representative now. More information on my Substack: https://lberetsky.substack.com/p/advancing-seizure-safe-schools

04/27/2025

Sometimes an epilepsy treatment plan feels like throwing spaghetti against the wall to see what will stick. But new research on genetic variants and drug-resistant epilepsy can help patients quickly determine whether anti-seizure medications will be effective or not. If not, patients and their neurologists can pivot to more effective treatment plans. More on my latest Substack post: https://lberetsky.substack.com/p/why-are-30-of-us-with-epilepsy-resistant

04/14/2025

Recent federal funding cuts are reducing resources and halting access to a new potential epilepsy cure. Moe on my Substack post: https://open.substack.com/pub/lberetsky/p/how-federal-budget-cuts-are-impacting?r=13f39t&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

03/26/2025

Happy Purple Day! Two elected officials recently spoke publicly about their epilepsy, British MP Rosie Wrighting, and Connecticut Congressman John Larson. Both stories highlight the importance of Purple Day and raising epilepsy awareness. More on my Substack: https://lberetsky.substack.com/p/happy-purple-day

03/17/2025

As Artificial Intelligence advances neuroscience, international collaboration is critical. Check out the Meld Graph, a collaboratively developed AI tool that can help neurosurgeons read MRI results and determine accurate appropriate epilepsy treatment plans.

As Artificial Intelligence advances neuroscience, international collaboration is critical. Given America’s isolationist tendencies, can we truly partner?

03/04/2025

Hooray, Connecticut and Oklahoma have joined six other states that have SUDEP awareness-raising legislation. Time to join the Epilepsy Foundation of America’s campaign to get our federal legislators to pass the National Plan for Epilepsy Act, which also has SUDEP Awareness-raising language. More here: https://lberetsky.substack.com/publish/post/158395550

02/11/2025

Happy International Epilepsy Day. Remember you are not alone. Check out people’s short video stories from around the world on the International Epilepsy Day’s journey page. (link: https://internationalepilepsyday.org/journey/). I’m proud to be part of this diverse group.