A Caregiver's Guide to Seizure Medications
2026-08-27 14:00 - 15:00 (America/New_York)
Presented by DEEP in partnership with CDKL5 in Color and Rory Belle Foundation

Seizure medications are one of the most common and important tools used in epilepsy care, yet many families find themselves trying to understand unfamiliar medication names, treatment plans, side effects, and frequent medication changes. Learning how anti-seizure medications work and why they are prescribed can help caregivers feel more confident when making decisions alongside their healthcare team.

Join DEEP and CDKL5 in Color for an educational webinar with Heather Nichols, Neurology PharmD from Children’s Hospital Colorado. This session will provide caregivers with a foundational understanding of anti-seizure medications (ASMs), including how they work in the brain, the major medication classes, and the many factors clinicians consider when developing an individualized treatment plan.

In addition to clinical expertise, this webinar will feature lived experience perspectives from caregivers who have firsthand experience navigating seizure medication journeys. Parent panelists will share the realities of trialing medications, balancing seizure control with quality of life, managing side effects, and advocating for their child’s unique needs.

Designed for caregivers of children living with developmental and epileptic encephalopathies (DEEs) and other complex epilepsies, this beginner-friendly session will help families better understand the role medications play in epilepsy care and prepare them for more informed conversations with their healthcare team.

You’ll Learn

The major classes of anti-seizure medications (ASMs)

How seizure medications work to reduce seizures

Why medication selection differs based on seizure type, epilepsy syndrome, age, and other individual factors

How clinicians approach medication combinations and treatment adjustments

Common side effects, monitoring, and medication safety

Treatment goals beyond seizure reduction, including quality of life

Questions families can ask when discussing medications with their healthcare team

Whether your child is starting their first anti-seizure medication or has tried many different therapies over time, this webinar will provide practical, evidence-based information to help you better understand your child’s treatment journey.

Clinician Speaker

Heather Nichols, Neurology PharmD, is a pediatric board-certified clinical pharmacy specialist in pediatric neurology at Children’s Hospital Colorado. She has been in this role for 3 years and has overall practiced pediatric clinical pharmacy, including neurology, with children’s health systems for 10 years after obtaining her PharmD from the University at Buffalo and completing residency training.

Her particular areas of interest include drug-resistant & explosive-onset epilepsies, DEEs, FIRES/NORSE, and women’s health in epilepsy. Her passion is working with families, providing medication education, and applying personalized medicine to optimize therapies for patients in her daily practice.

Parent Voices

Hailey Adkisson lives in Salem, Oregon, with her husband, Derek, their sons, Wyatt and Nolan, and their daughter, Juniper. She is a full-time communication faculty member at a local community college and a passionate advocate for disability inclusion and accessibility. When she isn’t teaching or advocating for her daughter, Hailey can usually be found digging in the dirt, attempting to nap, or perfecting her sourdough recipe.

Marissa Bishop, is mom to Gregory, a ten-year-old boy who lives with CDKL5 Deficiency Disorder. Diagnosed with epilepsy at 2 months old, Gregory has tried numerous anti-seizure medications with varying success. Despite years under her belt, Marissa still feels like many DEE parents – that treating seizures feels like a guessing game. She wants to have a better understanding of how anti-seizure medications work and how doctors may make treatment decisions so that she can better advocate for her son. You can learn more about Marissa, Gregory, and life with CDKL5 by tuning in to her podcast, CDKL5 in Color.

Rachel Heilmann, is a residency-trained, board certified, Clinical Pharmacy Specialist. She practiced in primary care and specialty pharmacy as well as led a team of 15 Clinical Pharmacy Specialists in a large health care organization for 15 years. Following the death of her daughter Rory Belle, she left health care in 2022 to co-found The Rory Belle Foundation to raise awareness and research for NARS1 Disorder.

She went on to complete a qualitative research fellowship in neurodevelopmental rare diseases at COMBINEDBrain, a consortium of patient advocacy organizations working towards clinical trial readiness. She recently started a new business rePURPOSEd Pharmacy Practice, where she works with advocacy organizations in deciphering and prioritizing their drug repurposing efforts.

Listening Out Loud: Joyful Communication Beyond Words
2026-09-10 14:00 - 15:00
Presented by DEEP in partnership with Rare Birds Foundation

Communication is about so much more than words. For children living with developmental and epileptic encephalopathies (DEEs) and other conditions that impact speech, meaningful connection happens through many forms of communication. Learning to recognize and respond to these moments can strengthen relationships, build confidence, and create more joyful interactions for the entire family.

Join DEEP and Rare Birds Foundation for an engaging webinar featuring Bethany Brown, SLP, and Shanna Allman, a professional therapeutic healthcare clown. Together, they will introduce the principles of Listening Out Loud, an approach that combines communication science with the creativity of improvisation to help families and professionals connect more deeply with children who communicate in unique ways.

Designed for caregivers, family members, educators, therapists, healthcare professionals, and anyone who supports children with complex communication needs, this session will explore practical, encouraging strategies that can be incorporated into everyday life.

You’ll Learn

How to recognize communication beyond spoken words

Simple ways to build meaningful connections through everyday interactions

How principles of improvisation can encourage communication, play, and engagement

Strategies for responding to your child’s unique communication style

Ways family members, educators, therapists, and healthcare providers can create more joyful communication experiences

Practical ideas you can begin using immediately at home, school, or in clinical settings

Whether your child communicates through eye gaze, facial expressions, gestures, vocalizations, AAC, or other individualized methods, this webinar will help you see communication through a new lens and leave you with practical tools for building stronger, more connected relationships.

Featured Speakers

Bethany Brown, SLP

Bio coming soon.

Shanna Allman, aka Dr. So-n-So, is a professional therapeutic healthcare clown with Laughter League, a national organization that works to bring joy, laughter, compassion, and connection to children’s hospitals and memory care facilities throughout the United States.
