Rare Epilepsy Network (REN)

The First-Ever #CACNA1A Multidisciplinary Clinic is NOW OPEN ?? A groundbreaking moment for the CACNA1A community happened yesterday! The Foundation leadership, alongside our Texas-based families, CACNA1A research network member Dennis Lal, PhD, and the team at The University of Texas Health Science Center at Houston (UTHealth Houston) opened the WORLD’S FIRST dedicated CACNA1A clinic—a huge leap forward in providing specialized care for those impacted by CACNA1A-related disorders and the start of our clinical trials network. This clinic offers genetic counseling, ensures comprehensive care for both children and adults and provides opportunities to participate in research. We are so grateful to Dr. Lal and the UTHealth clinical and research teams that made this possible. Join us in celebrating this historic moment on the 5th anniversary of the CACNA1A Foundation! Learn more about the clinic here: https://lnkd.in/emeCpGPz

Joining REN connects you to 150+ leaders of communities affected by rare epilepsy who know there is very little training to be an advocacy leader. REN is here to support the supporters and share ideas, learnings, and education. Visit https://lnkd.in/dH6CJFCK to check out our members and partners and join.

Allison Moise BSW, Hope for HIE’s Peer Support Coordinator, is at the Epilepsy Foundation National Epilepsy Walk and is a part of the first cohort of epilepsy research ambassadors going through training today! She ran into Ilene Penn Miller who we work with across many of the #epilepsy coalitions including the Rare Epilepsy Network (REN)! Allison is also our peer support lead for clinical trials, ensuring families enrolling in #clinicaltrials have support from a parent who also has enrolled her child in research. Building a culture of research and advocacy has been a big priority in our mission the last few years, and it’s amazing to see Allison grow in her journey and represent Hope for HIE (Hypoxic Ischemic Encephalopathy)! #HopeforHIE #HIE #HIEawareness #HypoxicIschemicEncephalopathy #PatientAdvocacy #InfantileSpasms #ResearchAmbassador #REN #RareEpilepsy #RareEpilepsyNetwork #HopeinAction

Today the Epilepsy Foundation hosted the 2025 National Epilepsy Walk. Planned by our incredible 2025 Walk committee chaired by Courtney Genosi Caputo. Where every voice, every story, and every step we took contributed to raising awareness and breaking down the stigma surrounding epilepsy. Today, we walked for the 3.4 million Americans living with epilepsy and the countless families, caregivers, and communities that support them. I want to take a moment to thank our incredible sponsors, volunteers, and staff who have worked tirelessly to make this event possible. ? National Signature Sponsor LivaNova ? National Community Sponsors Jazz Pharmaceuticals ? National Hero Sponsors Neurelis, Inc. and UCB ? And National Supporting Sponsors SK Life Science, Inc. Catalyst Pharmaceuticals, and WK Kellogg Co. I also want to acknowledge the many epilepsy partners who partnered with us today, joining together in unity and solidarity to support the epilepsy community. Thank you to CURE Epilepsy, The Danny Did Foundation, Rare Epilepsy Network (REN), Epilepsies Action Network, the Anita Kaufman Foundation, the Tuberous Sclerosis Association, the Dravet Syndrome Foundation, and the Lennox Gastaut Syndrome Foundation. We’re so grateful you joined us today. Our partnership and mutual support of the epilepsy community is helping ensure that no one faces epilepsy alone. As we reflect on this meaningful day, let us remember that every step we took is a step closer to better treatments, increased awareness, and fostering a stronger community through intentional connection??

One of my proudest moments: The tele precision counseling clinic is OPEN! ?? After nearly two years of meticulous preparation—covering regulatory compliance, credentialing, licensure, revenue management, liability insurance, and integration with hospital systems—our nationwide tele-precision genetic counseling clinic officially launched yesterday! Our very first family received comprehensive genetic counseling at the variant-specific level, including detailed prognostic insights and curated research, going beyond traditional gene/CNV-focused counseling. Currently available in 8 states reaching 130M people in the US, we're already working to expand our reach. Our clinic specializes in supporting communities impacted by #SCN1A, #SCN2A, #SCN3A, #SCN8A, #CACNA1A, #DEPDC5, #NPRL2, #NPRL3, #GRIN1, #GRIN2A, #GRIN2B, #GRIN2D, #SLC6A1, and chromosome #8p-related disorders. Please help spread the word! Feel free to reach out or visit our website for more information: https://lnkd.in/gVX_h72b Thank you to everyone who's supported us on this journey to advance precision genetic healthcare! #GeneticCounseling #PrecisionMedicine #Epilepsy #NeurodevelopmentalDisorders #Telehealth Leah Schust Myers, Shawn Egan, Ph.D., Jenny Burke, Kacie Craig, Gabrielle Conecker, Keith McArthur, Meagan L., Veronica Hood, Pangkong Fox, Sunitha Malepati, Lisa Manaster, Bina Maniar, Lauren Chaby, PhD, Dravet Syndrome Foundation, SCN2A- The FamilieSCN2A Foundation, International SCN8A Alliance, Hillary Savoie, CureGRIN Foundation, GRIN2B Foundation, Amber N. Freed, SLC6A1 Connect

Join our friends Pediatric Epilepsy Surgery Alliance and DEE-P Connections for tomorrow's webinar on the life-saving nature of epilepsy surgery with Dr. Taylor Abel. Register here to join in at 12 pm EST: https://lnkd.in/gKAw5Pdr

#TeamTESS has already been so busy in 2025! ?? Here’s a glimpse into what we’ve been up to: ?? January: Amber Black, Director of Operations, attended the Rare Advocate Development Workshop, hosted by Rare Epilepsy Network (REN), Mahzi Therapeutics, and Global Genes, to learn more about drug development. ?? February: Tanya L Brown, PhD, Scientific Director, represented TESS at Pacific Northwest Research Institute's Rare Disease Day Symposium, connecting with researchers, clinicians, and advocates at Seattle Children's Research Institute. ?? March: Kimberly Lodato Nye, Founder & Executive Director, spoke at the Charles River Laboratories 2025 Cell & Gene Therapy Summit, sharing her journey leading TESS and the importance of patient-driven research. We are grateful for these opportunities to learn, connect, and raise awareness for SLC13A5 Epilepsy! #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

March is National Brain Injury Awareness Month—a time to recognize the link between traumatic brain injuries (TBIs) and epilepsy. TBIs are a leading cause of epilepsy, but awareness, research, and support can make a difference. ?? #BrainInjuryAwareness #EpilepsyAwareness

This Friday, get to know two REN members doing amazing work for their communities on our Blog page. https://lnkd.in/gWgiQNKv. This week, the Koolen-de Vries Syndrome Foundation (https://lnkd.in/eMEbjPa) and Foundation for Angelman Syndrome Therapeutics leaders shared what they are especially proud of.