Celebrating the National Plan For Epilepsy Reintroduction: Part 2 - Thank You Extraordinary Epilepsy Advocates

Remarks from the bipartisan co-chairs of the Congressional Epilepsy Caucus – Senator Eric Schmitt (R-MO), Senator Amy Klobuchar (D-MN), Representative Greg Murphy, MD (R-NC), and Representative Jim Costa (D-CA)  - kicked off a briefing to reintroduce the National Plan for Epilepsy Act - S. 494 and HR 1189.

A recap of this celebratory milestone and our phemomenal panelists presentations follows. Listen to the briefing in full here or scoll for invidiual testimony.

The time to engage is NOW!

Contact your legislators and ask them to sign on to S. 494 & HR 1189.

Messaging and tools are here.

Bee Martin Lee, President & CEO, Epilepsy Foundation of America and person living with epilepsy set the celebratory tone at the outset of the event commemorating all of the work that led to this significant milestone.

She shared a tragic story about a family who went seven years without a diagnosis. She also shared her personal journey including overcoming stigma and hardships. Just two examples of the millions of people impacted and living with this disorder.

Bee emphasized the ongoing role all persons touched by epilepsy will play, "We want to bring this to the grassroots, because everyone living with epilepsy deserves the right to advocate for themselves, and this is a path to do so."

Following remarks from all four bipartisan co-leads, a panel of experts including a nationally reknown clinician, a medically retired veteran, and a caregiver to a son with a rare complex epilepsy, each shared their unique perspectives.

"We have to accelerate progress and coordinate the research, the treatment, the public health. So that all people with epilepsy can have better access to comprehensive care, robust funding for research, which is the only way that we're going to change that... [T]here's never been a more important time for us to make this happen. [W]hen we get a national plan, we're finally going to be able to have the impact and help all those people who suffer. The stakes are high for the more than 3.5 million people in our country, who are living with epilepsy and their family members, we can do better than we have." Dr. Dan Lowenstein's testimony is here.

"I became a Marine Corps Captain and served two deployments. 60 days after returning home, I experienced my first seizure. It took over a decade to receive the correct diagnosis. Refractory post-traumatic epilepsy. That's time I will never get back. But much more importantly, that's time that so many others are losing right now due to gaps in research, funding and care. Today, I'm a medically retired Marine Corps Captain who is turning the 14 years of battling TBI into a mission to serve others. The truth is, far too many service members, veterans and civilians are suffering in silence." Jack Somer's testimony is here.

"I want you to meet Elliott...who [is] 100% dependent on us for everything, and has treatment resistant epilepsy, developmental delays and intellectual disabilities. He had his first seizure on the first day of life and went many years without proper treatment. We spend a lot of time in the hospital. Kids like mine are spending far too much time in hospitals where doctors say they just don't know what to do next and we’re forced to make life changing decisions without a lot of information or data. 

You see your kid [having a seizure] and you're so powerless, you have no idea what you can do. But what I can do is speak out and speak up. Especially for children like Elliott, who don't have a voice to speak out on their own. We need a more coordinated and integrated effort across the national government and agencies to help us have better translation of research into actual life saving and life improving technologies and medications for our families and loved ones."  - Gabrielle Conecker, President and Co-Founder, Decoding Developmental Epilepsies, testimony is here.

Did you miss Part 1 and the testimony from our Legislative Champions? Check it out here.