This letter is posted for reference in work I have performed or been involved in.
September 5, 2014 – A letter of support written for congressional bill H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014. Submitted through POPVOX.
I’m writing as a father of a daughter with cerebral palsy and epilepsy. I want to urge your support of H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014 to amend the Controlled Substances Act to exclude therapeutic hemp and cannabidiol from the definition of marijuana.
My daughter suffered an inutero stroke and was born with cerebral palsy. Her first seizures started at approximately 8 months of age and have only ever been partially controlled with a combination of prescribed medications and a ketogenic diet. The type and frequency of seizures has changed over time, and in 2010 became so aggressive that she would become unresponsive, stop breathing and turn blue during a seizure. Each time this happened we were helpless as parents. Each time it was like preparing to watch your child die in front of you. In 2011 we were fortunate that our daughter qualified for a brain surgery (Pediatric Peri-Insular Hemispherotomy) which severed the nerves connecting the stroke-damaged side of her brain. The surgery successfully stopped her seizures. It has been 3 yearsvthat our daughter Natalie has been seizure free, and it still makes me emotional to talk about this because my family knows what it’s like to fight for someone you care so deeply about to not have seizures.
We continue to be involved in the Epilepsy community, and continue to advocate for people who have seizures. This House Bill is significant because through it comes a therapeutic solution for U.S. citizens that offers tangible and evident relief from seizures which are otherwise not controlled by medicine. There is stigma around the treatment because the oil is derived from a form of cannabis; however the amount of THC in the hybrid used is low enough to meet the federal definition of industrial hemp. The medicine is oral and is not psychoactive. CBD has significant neuroprotective properties, while causing fewer side effects than anti-seizure medications.
Please show support for this bill when it comes your time to weigh in. This bill offers hope to families whose lives are impacted by epilepsy. This is a viable treatment to significantly reduce seizures for some people who are not otherwise able to control their seizures. It is a safe treatment which has growing evidence of success.