Reflections from the 10th International LGS Foundation Family & Professional Conference
I came to Orlando as a first-time attendee, still relatively new to the LGS community. I am leaving inspired, hopeful, and more energized about the future of LGS research than I have ever been. Over three days, we laughed and we cried, we sang and we danced, but most of all, we connected. For those who could not join us in person, and for those I did not get the chance to meet, my name is Helen Chen, and it is my privilege to serve as your Research Director.
What moved me most was the sheer breadth of who showed up. LGS loved ones, their families and caregivers, researchers, clinicians, healthcare specialists, advocates, and industry partners all pulling toward a single goal: a better future for people living with LGS. That kind of unity is rare, and it is exactly what turns hope into progress.
Drs. Scott Perry and Renée Shellhaas grounded us in where the science stands today, presenting on “Today’s Standard of LGS Care: Diagnosis, Comorbidities and Treatment” and “Where Is LGS Care Strong? Where Are the Gaps?” Their honesty about both our progress and our unmet needs is exactly what we need to accelerate research. Specialists like Drs. Fabio Nasciemento and Babitha Haridas discussed adult care in LGS and what a first visit with an epileptologist should look like. LGS Caregiver Experts like Stephen Feather, Jordan Bradley, and so many others shared hard-won wisdom from daily LGS life, the kind of knowledge that makes another family’s road a little smoother. LGS siblings like Shaye McLeod, shared their unique perspective as caregivers. And our industry partners brought real expertise on medications, devices, and equipment that help keep our loved ones safe at home. Every voice mattered. Every voice taught me something new.
Powering Breakthroughs: 3 Grand Challenges in LGS
In his opening remarks, Fred Roedl, LGS Caregiver Expert and Board Chair announced a research initiative that will define the years ahead, Powering Breakthroughs: 3 Grand Challenges in LGS:
- Precision diagnosis: ending the diagnostic maze and building a foundation for precision care.
- Precision treatment: disease-modifying therapies that target LGS as a whole, not just seizure management.
- Whole-life care: comprehensive, whole-life care for individuals with LGS and their caregivers.
These challenges are bold on purpose. LGS deserves nothing less. To meet them, the LGS Foundation launched an ambitious $4 million fundraising campaign. Along with generous support from the community and the Becky and Scott Perry Family Fund, together we raised more than $55,000 during the conference alone. To everyone who gave: THANK YOU! You did not just donate; you invested in progress and answers. Let’s keep this momentum going!
Why the LGS-CORE Study Matters
Nothing brought the 3 Grand Challenges to life quite like Kurt and Kassie Oberhausen, who shared the story of their daughter, Addison, their family’s LGS journey, and why they chose to become research partners in the LGS-CORE study. Their decision captures something essential: your family’s story is the research!
The LGS-CORE study is a powerful tool built by the LGS community to advance our understanding of LGS, identify unmet needs, improve standards of care, and discover new therapies. When families participate, they become part of the research team itself. The data they contribute guide scientists working to change what LGS means for the next generation and flow back to the community following new discoveries. Every family who joins makes the picture clearer and the breakthroughs closer. This is how we turn love into evidence, and evidence into hope.
Joy, Community, and Remembrance
Amid all the science, one of the brightest highlights was Camp Small Steps, an inclusive, safe, and immersive experience for all ages. Our campers and their families made arts and crafts, went fishing, and roasted s’mores, and we closed the night singing around the campfire. I am still humming Bruce Springsteen’s “Born in the U.S.A.”, a favorite of one of our LGS campers. Thank you, UCB, for the support and partnership that brought so much joy to our community.
We closed our time together with the Celebration of Life Butterfly Release, honoring and remembering the LGS loved ones we hold in our hearts. To our bereaved families: thank you for sharing your stories and for showing up for this community. Your strength and resilience humble me, and please know we are always thinking of you and your loved ones. You are the reason this work is not only important, but urgent.
As I sit here and reflect, my heart is full of love and hope and my notebook is full of research ideas for tackling our 3 Grand Challenges. Thank you for showing up for yourselves and for one another, for welcoming me so warmly, and for trusting me to serve as your Research Director. The future of LGS is being written right now, together, by all of us. I cannot wait to see what we build next.
Written By: Helen Chen, PhD
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Updated 07/22/26 (AM)