Epilepsy Alliance America

On Juneteenth, we celebrate liberation and the powerful legacy of Black communities who have shaped our nation.

As we reflect on this day, we also acknowledge the ongoing inequities in epilepsy diagnosis, treatment, and access to resources. At Epilepsy Alliance America, we are dedicated to advancing health equity and ensuring that every individual has the support they need to thrive.

Together, we move toward a future rooted in justice and inclusion.

Summer Camp Safety Tip: Before camp starts, confirm the camp’s medication policies - how meds must be packed, labeled, stored, and given. A little preparation goes a long way toward a safe, supported camp experience.

Learn more: https://epilepsyallianceamerica.org/seizure-safety/summercampseizureprepared

Join Triage_Health for a FREE webinar on June 23 focused on practical resources to navigate life after a serious medical diagnosis. This session will explore the legal, financial, and emotional challenges that often accompany health concerns and highlight key programs designed to help. Attendees will learn about financial and legal assistance options, mental health services, patient advocacy and navigation support, and other
valuable resources. The webinar will also share tips for working with financial planners and completing essential paperwork to access available benefits. + FREE CE for professionals.

Register: TriageHealth.org/Webinars

If you missed our webinar last week about staying safe with epilepsy all summer long, it's available on our YouTube channel! Thanks to member organization Epilepsy New Jersey and Epilepsy Alliance America Professional Advisory Committee member, Dr. Inna Hughes, for this informative session on practical strategies for summer safety.

https://youtu.be/K9Bt5JMnmZc

You’d never guess that Drew Dixon quit guitar lessons at 7 years old. But through this same childhood whimsicality, a journey began in which he discovered a deep belief in music’s effects on the brain and the soul. Now Drew has a successful music career that his 7-year-old self would never believe — including his recent hit “Running.” (Stay to the end for an acoustic play of it!)

On the latest episode of the What the Ef podcast, Drew shares his songwriting process, what it actually takes to survive the music industry (full rooms, empty rooms, overnight tours — you play them all), and his work doing music therapy with hospital patients. And how he manages all of this while managing his epilepsy.

We rewind and talk about the normalcy of keeping epilepsy a secret as a teenager and why Drew didn’t even tell his childhood friend who *also* has epilepsy and what happened when he did….you might recognize this friend! Dr. Dan Snelgrove (re: “The Pitt” episode) joins the convo to talk about his and Drew’s journey co-founding Electric Minds Foundation, a nonprofit dedicated to bringing joy — and Disneyland — to kids with epilepsy.

Epilepsy Alliance America is a proud sponsor of What the Ef.

Join member organization Young Adults with Epilepsy for their upcoming workshop on memory and cognition. This workshop addresses fears and anxiety feedback loops that arise from memory and cognition problems head-on, potential repercussions, and resources to help people with epilepsy succeed.

Friday, June 19th
1:00- 2:30 PM PDT

RSVP here: https://www.youngadultswithepilepsy.org/event-details-registration/wait-what-a-discussion-on-memory-and-cognition-3

Whether you’re planning a weekend getaway or a longer vacation, a conversation with your healthcare provider can help you prepare for a safe and enjoyable trip.

Before you travel:

• Make sure you have enough medication for your entire trip (plus extra, if possible)
• Ask about managing medications across time zones
• Discuss any seizure-related concerns specific to your destination
• Review your seizure action plan

A little planning can help you travel with greater confidence.

More travel safety tips here: https://epilepsyallianceamerica.org/seizure-safety/seizure-safety-tips-travel-and-vacation/

Check out CURE Epilepsy’s most recent episode of the Seizing Life podcast , “Epilepsy and Medical Trauma: Recognizing, Accepting, and Healing.”

Medical trauma is a common, and often overlooked, experience for people living with epilepsy, their caregivers, and their families. This episode explores how it shows up in daily life, when it may be time to seek support, and practical tools to begin healing.

The conversation features Dr. James Jackson, psychologist and neuropsychologist at Vanderbilt University Medical Center and author of Reclaiming Your Life from Medical Trauma. As the son of a parent with epilepsy, he brings both professional expertise and personal insight into the emotional impact epilepsy can have on individuals and those who love them.

https://www.cureepilepsy.org/seizing-life/epilepsy-and-medical-trauma-recognizing-accepting-and-healing/

Recent survey findings from SK Life Science, Inc. reveal that many people with epilepsy are open to discussing new or different treatment options; yet conversations about change can still feel difficult. These insights highlight how important clear communication, shared decision‑making, and accessible information are for every patient‑provider partnership. Together, we can make treatment discussions more informed, collaborative, and empowering.

For some people with epilepsy, regular meals and snacks can support seizure control. Share dietary needs, such as allergies, food sensitivities, or specific diet protocols such as Keto with camp staff so your camper can stay fueled, safe, and included.

More tips: https://epilepsyallianceamerica.org/seizure-safety/summercampseizureprepared