Inspiring families of loved ones with
Dravet syndrome or Lennox-Gastaut syndrome (LGS)
In partnership with the Dravet Syndrome Foundation (DSF) and Lennox-Gastaut Syndrome Foundation (LGS), the Shine Forward community was developed by caregivers for caregivers to share education, helpful resources, and inspiration for families living with Dravet syndrome and LGS.
Dravet syndrome and LGS are both rare forms of epilepsy, resulting in various types of seizures. Both syndromes place significant burden on caregivers and families, with extended needs for care and constant support. Additionally, depending on disease and severity, patients face intellectual disabilities, developmental delays, behavioral issues, and problems with mobility.
“As dad, what drives me most at the end of the day, and first of all is Addison, it’s coming home to Addison’s smile, to her laughter, to her hugs and kisses. And that’s what drives me every single day. And when Addison was diagnosed with LGS, I guess people go through those stages of grief and for myself as soon as she was diagnosed, and I just had this feeling of, I have to do something. I just can’t sit here and be sad or depressed about this or feel hopeless. I just need to do something.” —Kurt, Addison’s dad
Challenge
Dravet syndrome and LGS don’t stop with the patient—they affect the quality of life of families and siblings, caregivers, and their broader support system, causing a ripple effect that touches every facet of living.
Anxiety, constant vigilance, chronic sleep disruptions caused by nighttime seizures, and the strain of navigating complex healthcare systems can leave families feeling overwhelmed. Caregivers often report high levels of emotional stress and information overload, particularly following diagnosis when their need for specialty healthcare and support is especially high.
Furthermore, the unrelenting nature of evolving symptoms, compounded by frequent medical appointments and therapy sessions, can make day-to-day life exhausting and isolating.
Insight
While rare conditions like Dravet syndrome and LGS may be classified under the umbrella of “epilepsy,” their complexities extend far beyond seizures.
“We have seen Klohe’s life change....She is laughing for the first time.
She’s grabbing for toys.” —Jordan, Klohe’s mom
Solution
Shine Forward, together with UCB, recognizes that improving care for people living with epilepsy means addressing both seizure- and nonseizure-related outcomes. This requires a holistic approach, with research that expands on current disease understanding, combined with initiatives that promote earlier diagnosis, enhance treatment innovation, and strengthen support systems.
Objective
Foster greater recognition of the broader impacts of rare epilepsies, prioritizing both medical and nonmedical needs to enhance patient and family outcomes.
Approach
Impacted lives are full of stories of resilience, expert voices longing to be heard, and an urgent need to bridge gaps in treatment and care.
In creating Shine Forward, it was critical to consult with families to better understand their needs and to amplify their stories to feel seen, supported, and connected. The authentic nature of the site, inspirational messaging, and helpful resources make the cornerstone of the program an essential repository of hope and guidance.
Our platform helps increase disease state education, works to reduce stigma, and celebrates community and connection among the underserved and underrepresented Dravet syndrome and LGS communities. To deepen impact, we engage directly with caregivers and loved ones, partnering with the DSF and LGS Foundation for advocacy and education events such as the 2024 DSF Caregiver Conference, the 2025 Day of Dravet, and the 2024 LGS Foundation Caregiver Conference. These touchpoints bring Shine Forward to life in real, personal ways.
The spirit of the program is magnified through its branding.
A bright and cheerful feel reflects possibility, positivity, and purpose.
“The advice that I would give to other caregivers of LGS patients—that’s all I can speak for—is to make sure that you check in with yourself. You do the self-care.” —Carmen, Corey’s mom
“But I found that—I don't even like the word ‘planning,’ but just trying to stay somewhat organized and planning helps.” —Billie, Allison’s mom
VIP SIBLINGS KIT
Created to support the often-overlooked siblings of children with complex medical needs, the VIP Siblings Kit offers age-appropriate tools, resources, and activities designed to help siblings feel seen, supported, and empowered. From journals and conversation starters to games and emotional expression guides, the kit provides families with meaningful ways to strengthen sibling bonds and foster emotional resilience.
CARE COMPASS
CareCompass is a free, digital platform developed by UCB to support caregivers of loved ones living with Dravet syndrome or LGS. Designed as a centralized hub, CareCompass helps simplify caregiving by organizing key information—like medications, emergency plans, daily routines, and patient details—all in one easy-to-access place. While initiated by UCB, CareCompass was built hand-in-hand with caregivers through interviews, testing, and research to ensure it truly meets the real-world needs of families managing rare epilepsies.
When it comes to Caring for Adults with Rare Epilepsy (C.A.R.E.), we created this highly interactive planning tool to support individuals and the families who care for them.
Shine Forward Influencers
Our eight Shine Forward influencers are caregivers of loved ones living with Dravet syndromes or LGS. These educators and storytellers help raise awareness, celebrate hope and resiliences, as they share their own authentic day-to-day experience, in their own voice, on their own personal social media channels. Their posts feature rare syndrome disease education, caregiver tips, sibling support, emotional reflections, helpful tips and resources. Living with Dravet syndrome or LGS can be very isolating, and these caregivers help build connection and provide support to strengthen the rare epilepsy community. Collectively, they generated nearly 30,000 followers and over 21,000 engagements.
“We do a lot of things that set us up for success because the boys really do thrive on organization and us being grounded. And so I think the way that we hang on to that loosely, but having that framework is really important to have structure and have—they could count on certain things.” —Nicole, Aushay’s mom
Results
Shine Forward With
Dravet and Lennox-Gastaut Syndrome (LGS)
15K
social media followers for Shine Forward Facebook/Instagram
30K
social media followers for Shine Forward Influencers
2.5K
CRM database
