June is Dravet Syndrome Awareness Month, a time dedicated to raising awareness and 
supporting families affected by rare epilepsies such as Dravet syndrome (DS) and 
Lennox-Gastaut syndrome (LGS).

Every milestone matters—especially the ones fought for every single day.

This June, in honor of Dravet Syndrome Awareness Month, UCB is proud to spotlight Camp 
Small Steps, an inclusive program designed for families living with Dravet syndrome and 
expanding to the Lennox-Gastaut syndrome community. Rooted in the experiences of patients 
and caregivers and inspired by the community, Camp Small Steps celebrates moments that 
might otherwise go unnoticed, recognizing the small steps gained that many of us take for 
granted.

See how Camp Small Steps brings these moments to life HERE.

What Is Camp Small Steps? 
Camp Small Steps is a first-of-its-kind, inclusive, camp-inspired experience designed to help 
families affected by rare epilepsies connect, recharge, and create joyful memories that can feel 
especially meaningful amid the challenges of everyday life.

Initially hosted in partnership with the Dravet Syndrome Foundation (DSF) during the 2025 Day 
of Dravet events, this year, for the first time, families in the Lennox-Gastaut Syndrome 
Foundation (LGSF) community will have the opportunity to be a part of this special experience.
Camp Small Steps takes place alongside the DSF’s and LGSF’s Family and Professional 
Conferences this summer, meeting families where they already gather for education, support, 
and community.

It is intentionally designed as something different from a traditional overnight camp. 

Key features of Camp Small Steps include:
 

• Sensory-friendly and accessible activities
• Inclusive experiences for siblings, caregivers, and loved ones
• Safe, supportive environments designed for epilepsy needs
• Moments centered on connection, joy, and rest
   

Why Camp Small Steps Matters for Dravet Syndrome and LGS Families

Dravet syndrome and Lennox-Gastaut syndrome are rare, severe forms of epilepsy that begin in childhood, touching not only the individual but reshaping daily life for their entire family.¹
Day-to-day life can include frequent seizures, developmental challenges, and ongoing 
caregiving responsibilities that often make traditional family activities difficult or inaccessible.

Caregivers consistently share experiences such as (based on insights from research conducted by UCB with caregivers in the Dravet Syndrome community):

• Caregivers are deeply motivated to improve their child’s quality of life—not only by 
  managing seizures, but by supporting everyday moments of development and joy
• Many caregivers express a need for greater support and resources as they navigate 
  complex and ongoing care responsibilities
• Children continue to seek play, sensory engagement, and exploration, even when safe 
  opportunities are limited
• Families often face difficulty finding environments where their loved one can safely 
  participate without concerns around accessibility or overstimulation
• Opportunities for in-person connection with other families who truly understand their 
  journey remain limited
   

These insights reflect the lived experiences of families navigating rare epilepsies every day, and
programs like Camp Small Steps are designed in response to these real-world needs.
 

What Activities Are Included? 
Each Camp Small Steps experience includes thoughtfully designed activities focused on sensory engagement and connection, such as:

• Arts & crafts stations for creative expression
• Makeshift fishing areas with soft canoes
• Sensory-friendly play zones with calming environments 
• Photo moments to capture lasting memories 
• Music stations for individual play and expression
   

The experience also includes a shared family dinner, campfire jams, and sing-alongs that bring 
families together in a fun, relaxed setting. Every part of the experience is intentional, no 
flashing lights or overwhelming noise—just joy, care, and togetherness.

What’s New for 2026? 
In 2026, Camp Small Steps expands to include the Lennox-Gastaut Syndrome (LGS) community alongside Dravet Syndrome families.

The experience will be hosted in partnership with:
 

• The Dravet Syndrome Foundation Family & Professional Conference (June 25–27)
• The Lennox-Gastaut Syndrome Foundation 10th International Family & Professional 
  Conference (July 9–11) in Orlando
   

As part of UCB’s Shine Forward with Dravet and Shine Forward with LGS initiatives, Camp Small Steps helps connect families with:
 

• Caregiver support resources
• Sibling support programs
• Trusted rare epilepsy education and tools
   

Why Dravet Syndrome Awareness Month Matters for Families?
Dravet Syndrome Awareness Month is a time to increase understanding of rare epilepsies and 
highlight the resilience of patients and caregivers.

Programs like Camp Small Steps remind us that progress doesn’t always look dramatic. 
Sometimes it looks like a shared laugh, a calm moment, a child trying something new, or a 
family simply feeling included.

Because when families are supported, every small step can shine forward.

Reference

1. Childhood Epilepsies: Dravet and Lennox-Gastaut Syndromes | NeurologyLive - Clinical 
   Neurology News and Neurology Expert Insights
    
2. ©2026 UCB, Inc., Smyrna, GA 30080. All rights reserved. US-DA-260045