The Epilepsy Foundation is a family-led organization, run by individuals and families who are affected by epilepsy and passionate about finding a cure. Phil Gattone, President & CEO of the Epilepsy Foundation, and Warren Lammert, Past Chair, Epilepsy Foundation Board of Directors, both have children living with epilepsy. Read their stories -- and why they support compassionate access -- below.
As the President & CEO and as the Chair of the Board of the Epilepsy Foundation, we are privileged to lead a nationwide network of caring volunteers and staff who work tirelessly to improve lives of individuals living with epilepsy.
We are also fathers of individuals living with epilepsy. Phil’s son has had thousands of seizures in his life and has endured two brain surgeries to stop his seizures. Warren’s daughter has a genetic form of epilepsy that is marked by severe seizures and, despite an implanted medical device and three different epilepsy medicines, endures daily waves of seizures.
Some individuals, specifically families of children with uncontrolled seizures, are using what is called cannabidiol oil, or CBD oil, and anecdotally a few are seeing remarkable results. This is truly spectacular -- anytime someone finds a treatment that stops seizures, there is cause for celebration because seizure freedom for one person means hope of seizure freedom for others.
There is still a lot we don’t know about the medical use of marijuana for epilepsy. Until clinical trials are completed, doctors and patients will not know whether medical marijuana or CBD will on balance harm someone or help someone with epilepsy. We are advocating f
or the rights of patients and families to determine with their doctor if this is an appropriate therapy for them, but we recognize the unknowns and the difficulty of this decision for an individual patient.
There is an obvious and urgent need for research. The Epilepsy Foundation is proud that we are currently funding an important research study to learn more about the effect of a form of cannabis on individuals living with uncontrolled epilepsy.
As fathers, we know the pain of watching our children experience uncontrolled seizures. We know how epilepsy impacts development in children for whom no available current treatment has been successful. We know about the dangers that can occur when families are forced to leave medical systems and physicians they know to move
to other states. We know seizures not only affect the individual enduring seizures, they also impact siblings, parents, grandparents, kids and grandchildren, other loved ones and friends. We know the difference between having recurring seizures and not having seizures can mean the difference between life and death.
Warren’s daughter is fortunate to be enrolled in a clinical trial of CBD.
We do not know if this will help Sylvie but know the cost of her unrelenting seizures. Weighing the issue with her doctor, we decided the potential benefits outweigh the risks. Other parents and other individuals living with potentially devastating seizures should have the same opportunity to make that determination.
If an epilepsy patient and their doctor feel that marijuana is their best treatment option then they need to have safe, legal access to medical marijuana and they need that access now.
In 2014, Warren Lammert was interviewed by CBS Dever about how Sylvie's epilepsy drives his advocacy for CBD access. Watch and read his moving interview here.