Speakers
FRIDAY KEYNOTE
SUNDAY KEYNOTE
Our Opening Keynote Speaker: Ruchi Koval
We are thrilled to announce that Ruchi Koval will deliver the opening keynote address at next year’s conference. Ruchi is a certified parent coach, renowned author, and dynamic speaker who has inspired thousands with her practical wisdom and heartfelt approach to parenting.
Her keynote, “Living with and Loving Your Special Needs Child,” promises to be both inspirational and informative, offering invaluable insights for parents, caregivers, and advocates in the special needs community.
In addition to her professional accolades, Ruchi is the founder and Associate Director of the Jewish Family Experience, an innovative spiritual community in Cleveland, Ohio. She’s also the proud mother of seven children and a newly-minted grandmother. Her personal and professional experiences bring a unique blend of expertise, compassion, and relatability to her work.
Don’t miss this powerful session that will set the tone for a conference full of connection, learning, and hope.
Transforming Possibility into Reality: The Power of Research and Hope: Dr. Jenny Gallop
Jenny Gallop is a Professor at the University of Cambridge, UK in the Department of Biochemistry and leads a research group at the Gurdon Institute. As a cell biology expert, her lab studies how components at cell membranes build and remodel a filament system inside cells called the actin cytoskeleton. As it pertains to Lowe Syndrome, she looks at how membranes and the actin cytoskeleton are altered in kidney and brain cells and how the changes can be rebalanced.
Dr Gallop serves on the LSA's Medical & Science Advisory Board where among other things, she co-led the execution of the 2023 International Research Symposium in Naples, Italy and participated in the 2024 Research Symposium at Purdue University in West Lafayette, Indiana.
Much research has transpired over the past several years around the kidney (Aguilar, de Matteis and Staiano research groups), brain (Lachman and Padinjat research groups), and potential treatments for Lowe syndrome (Piclidenoson and Alpelisib). This talk titled- "Transforming Possibility into Reality: The Power of Research and Hope" will briefly summarize these studies and provide a sense for how we are proceeding as an international research community to collaborate and move swiftly towards therapeutic discoveries.
Dr Gallop, her husband Matt and their two children live in Cambridge UK, where they enjoy spending time together as a family, cooking and sailing Optimist dinghies.
Charting a Course for Connection, Community and Support Workshop: Led by Celia F. Schloemer, Family Support Coordinator, UCCEDD/CCHMC
Speakers, Panels, and Workshops
In this 2 hour multifaceted workshop, we will learn about the key pillars of Charting the Lifecourse (CtLC)- a powerful tool that helps families chart a vision for their best life. Then, collaborating in teams, we will connect the power of the CtLC framework using tools to build connection and community for our families. We will share and work together to understand how CtLC can be used to intentionally enhance our connections to others and to our greater community to grow reciprocal relationship and support. We will support opportunities for conversations about planning, problem-solving and to address barriers.
Self-Care for the Caregiver: Presented by Naila Goldenberg, MD
In this insightful talk, Dr. Goldenberg will share her clinical expertise on caregiver health and wellness. She will explore common root causes of imbalance, with a particular focus on women, addressing how natural mid-life changes impact mental, physical, and emotional well-being. Attendees will leave with practical strategies to prioritize self-care while navigating the demands of caregiving.
Seizure Training/Certification: Presented by Crystal Hall, DrPH- Epilepsy Foundation
The Seizure Recognition and First Aid Certification program contains information and activities on seizures, epilepsy, and seizure first aid. The first aid procedures presented in this training reflects the standard of knowledge and current best practices. This information is presented in a format suited for direct training of the public. Participants who successfully complete the course will receive a two-year certification.
Roundtable on Grief /Emotional Support for the LS Family: By Donna McCartney, LISW, MHA
Hear and gain insights on navigating grief and emotional challenges following a loss. Drawing from her extensive experience as a bereavement counselor and healthcare professional, she provides guidance on coping strategies, emotional support, and resources for individuals and families facing loss.
Lowe syndrome & the Kidney Panel Discussion - Understanding Kidney Labs, Treating Fanconi Syndrome, A Kidney Transplant Journey and Purdue University's Approach to Kidney Research: Presented by Dr. Eileen Brewer, the Albertson Family and Dr. Aguilar
New Family Panel - Lowe Syndrome 101 with LSA’s Medical /Scientific Advisory Committee: Led by select members of the LSA’s Medical Board: Dr. Brewer, Dr. Nussbaum, Dr. Paul, Dr. Sun, Dr. Lewis, and guest Dr. John Gennantonio (pediatric dentistry)
Experienced Family Panel - Navigating Resources Discussion: Led by LSA Community members Cori DeGori and Theresa Haugen and Leeah Broms
Sibling Social: With Cristen Alberts, LSA Board of Director
As we invite and confirm more conference speakers, we will share that information here.
Please check back to see any updates.