Quick recap
The meeting focused on advocacy efforts for epilepsy care and CTE education, including discussions about legislation, funding, and partnerships with various organizations. The group reviewed and refined resolutions related to youth tackle football, transportation access, and healthcare legislation, while also planning to collaborate with football foundations and prominent players for broader outreach. They concluded by discussing strategies for navigating relationships with epilepsy organizations and exploring legislative approaches for CTE education and epilepsy transportation access, with plans to restart efforts on mandatory reporting for seizure disorders in 2026.
Summary
Epilepsy Advocacy and Legislation Planning
Selim and Stella discussed their efforts to gain support for a resolution and potential legislation related to epilepsy care in California. Stella shared her conversation with Wendy, CEO of Young Adults With Epilepsy (YAWE), about involving the Epilepsy Alliance in California to strengthen their advocacy. They discussed the need for funding and research to support their cause, with Stella suggesting framing it as funding productive members of society. Selim planned to reach out to Stuart Thompson to align their stance on a specific bill and to seek his guidance on their current initiatives. They also prepared for an upcoming Epilepsy Foundation meeting and gala, with Selim planning to make connections with politicians and organizations.
Youth Football Resolution Discussion
The group reviewed a statement submitted by Dr. Nowinsky in support of a youth tackle football resolution on the CMA Forum, which Stella had already posted. They agreed to meet with Dr. Nowinsky next Thursday, and Selim noted that he would need to be added as a host for future meetings.
CTE Education and Flag Football Campaign
Selim and Stella discussed strategies for promoting CTE education and creating a video to target young audiences about the benefits of flag football over tackle football. They planned to collaborate with Chris's foundation, Concussion Legacy Foundation (CLF), for a national video campaign, focusing on protecting young brains and promoting flag football. Selim also aimed to gather insights from Chris's foundation's efforts in Alabama to address potential challenges in CTE education. Additionally, they considered involving prominent football players like Steve Young in their advocacy efforts, with plans to track down former players in California or leverage their endorsements for a broader reach.
Epilepsy Transportation Advocacy Strategies
The group discussed strategies for advocating for epilepsy transportation access, with Selim reporting outreach from epilepsy foundations in California seeking information about their transportation resolution. Jeff suggested framing the issue by emphasizing that epilepsy affects only about 8% of the population, making it a relatively small financial burden on transportation agencies while offering significant societal benefits. The group agreed to be cautious about promising increased funding to transportation agencies, as this could lead to skepticism when actual numbers don't materialize, and Stella mentioned a previous successful epilepsy transportation program in Tennessee that could provide valuable insights.
Epilepsy Organizations Partnership Strategy
The group discussed navigating relationships with epilepsy organizations, particularly the Epilepsy Foundation of Los Angeles (EFLA) and Epilepsy Alliance (EA). Jeff and Selim agreed to reach out to neurology organizations in Southern California and San Diego, offering collaboration opportunities while remaining clear about CNS's non-profit mission. They decided to ask organizations for either active participation or letters of support, ensuring transparency about their goals and maintaining a focus on patient advocacy.
Support for Employee Prioritization Bill
The group discussed Assembly Bill 393, which requires the Department of Human Resources to prioritize state employees over contractors for certain positions. They agreed to support the bill, with Stella providing contact information for Representative Jimmy Panetta's staff. Robert explained that the bill would prevent corporations from using prior authorization to deny care and overcharge for services. The group also discussed concerns about corporate interests and the potential for misuse of government funds but ultimately supported the bill as beneficial for healthcare and state employees.
Healthcare and Concussion Education Resolution
The group discussed two main topics: healthcare legislation and concussion education. Selim agreed to write a letter about healthcare legislation and share the bill and committee analysis with the team. They reviewed and refined a concussion education resolution, focusing on requiring annual distribution of CTE education materials to guardians of K-6 students participating in contact sports. The resolution was shortened to less than two pages and included provisions for tracking compliance, integrating CTE awareness into health education, and implementing safety measures in youth sports.
Neurology Document Review Discussion
The group reviewed and discussed a document, with Stella offering to submit it on behalf of the California Neurology Society. They debated the inclusion of a "peer review" line, with Jeff suggesting it might be too technical for legislators and recommending "evidence-based" as an alternative. Selim agreed to make this change and send the final document to the group for review. Johanna mentioned she had written another resolution on lifestyle factors contributing to strokes and obesity, which she planned to share with the group.
Advocating for CTE and Epilepsy Legislation
The group discussed pursuing legislation for CTE education and epilepsy transportation access in California. Selim will meet with Senate Committee consultants to develop a bill draft, while Jeff suggested reaching out to Stuart Thompson at CMA for collaboration and support. Johanna offered to provide names of doctors who know their legislators, and Stella emphasized the importance of involving law enforcement in their advocacy efforts. The team agreed to explore both legislative and resolution-based approaches, with Selim planning to gather epilepsy foundation data to identify potential legislative sponsors.
Seizure Reporting Bill Veto Discussion
The group discussed a bill regarding mandatory reporting of patients with seizure disorders to the DMV, which passed the Legislature but was vetoed by the Governor. Jeff explained that only 6 states have mandatory reporting, and voluntary reporting has worked in the other 44 states. The group agreed to start working on this issue again in 2026 when a new governor takes office, and Stella suggested supporting a physician running for governor in a purple district. Selim announced that he had sent the final version of the resolution and bill analysis for AB 393, and the next meeting was scheduled for August 20th.
Read the resolution here.
