Advancing strategic national policies, innovative research programs, and funding to improve the lives and outcomes of ALL those living and struggling with The Epilepsies.

Epilepsies Action Network (EAN) has sprung into action! You are receiving this enewsletter update because you have joined past EAN efforts or expressed an interest in staying informed. Read on for a summary of progress and activities underway and upcoming.

A few key dates and ways to engage now:

• Join the Coalition here. Add your support and logo to our website, materials and more;

• Register for our Stakeholder Briefing, April 18 @ 2 PM ET. Hear an update, share your inputs, and get answers to questions. Advance registration required here; and

• If you live in WI, WV, CT or AL - join our letter writing campaign now. (more below)

   

Planning is underway for an Epilepsies Congressional Briefing (including a seizure first aid training) in early May (date TBD) co-hosted by the new Epilepsy Congressional Caucus. More information will follow once dates are confirmed. Persons touched by the epilepsies, as well as physicians/researchers will explain the urgent need to translate research to care and how increased federal funding will achieve these goals.

You can stay abreast by following our blog and LinkedIn as well as signing up to receive updates like this here. If you have any questions or want to share feedback? Contact Ilene Miller, ilenepennmiller@gmail.com.

WHO WE ARE & HOW WE GOT HERE

Last Fall 2022, a new consortium - Epilepsies Action Network (EAN) - launched to develop national government relations strategies to increase federal funding for research, translation, care, and cures for the epilepsies. We welcome ALL epilepsies stakeholders who share our vision and mission.

Through the fall/winter we also: 

• Asked Advanced Research Projects Agency for Health (ARPA-H) for transformative new solutions for the diagnosis, treatment, and management of the epilepsies. 

• Wrote to Congressional leaders for increased funding for the Undiagnosed Disease Network (UDN), which received $18m in the FY23 omnibus funding package.  

• Met with the White House Office of Science and Technology Policy to raise the profile of and funding for the epilepsies, and

• Actively listened to stakeholder inputs via the Epilepsy Leadership Counsel (ELC) Task Force landscape analysis and stakeholder meetings.

A NEW CONGRESS & CLIMATE

In December, the FY23 Omnibus budget passed and contained many positive provisions for the epilepsies including increased funding for the HHS Chronic Disease Prevention and Health Promotion Epilepsy line, and continued funding for the VA Epilepsy Centers of Excellence and the Department of Defense Research Program for Epilepsy.

The new Congress was sworn in and committee assignments finalized. Raising additional funding in FY24 won’t be easy, but we look forward to advocating for increased federal investment in the epilepsies despite this challenge.

In February, a first-ever bipartisan Congressional Epilepsy Caucus launched led by Rep Murphy (R-NC) and Rep. Costa (D-CA) which will give everyone living with the epilepsies a much needed voice in Congress and the nation’s capital.

DISTILLING PRIORITIES

Our diverse community generated many priorities around enhanced healthcare delivery systems, clinical trials consortiums, surveillance, SUDEP, ICD codes, biomarker initiatives, brain mapping, cross agency partnerships, a National Act for Epilepsies and more.

We honed in on two federal appropriations requests that reflected the priorities and interests of the broader epilepsies' stakeholder community AND may have traction in light of the current Congressional landscape.

These asks are directed to the Labor, Health and Human Services, Education (LHHS) and Related Agencies Committee which oversee NIH and CDC appropriations and include:

1. NIH – Pediatric-Onset Epilepsies Consortium - $10m for National Institute for Neurological Disorders & Stroke (NINDS) and National Center for Advancing Translational Sciences (NCATS) to enable cooperative research studies, accelerate the development of knowledge about the epilepsies, and rapidly advance therapeutic options and their implementation to improve treatments and patient outcomes. This request addresses the gaps between research discoveries and their implementation into standard clinical care and improved patient outcomes. Similar consortiums have proven success in other diseases including pediatric cancer, Alzheimers disease, diabetes, Parkinson's disease and others. Furthermore, to expedite translation, we request that NINDS prepare and submit an annual report on their progress in the epilepsies and incorporate key findings and planned actions resulting from convenings of the Curing the Epilepsies conference. 

2. CDC – Epilepsies Surveillance – Continued $5m funding of the National Neurological Conditions Surveillance System (NNCSS), and a report from the CDC on current gaps in surveillance data of people living with the epilepsies and the feasibility, cost and timing of case reporting epilepsies through its addition to the System. Simply put, the NNCSS is established and directed to include all neurological conditions. It started with multiple sclerosis (MS) and Parkinson's disease. We are recommending that the epilepsies be the next disorder in line for inclusion to generate more timely and accurate national surveillance data to improve our understanding of incidence, prevalence, and deaths for all epilepsies. Furthermore, it will corroborate the need for increased funding across the federal spectrum to address the many needs of people living with the epilepsies. 

CONVERTING ASKS TO ACTION

Converting appriopriations requests to action requires several strategies. We have 3 parallel activities underway: 

(2) Outreach to Agencies. Simultaneously, we are reaching out to Agency leaders at NINDS, CDC, NCATS and more to build support and partnership for our asks.

(3) Coalition Building. And we are reconnecting with YOU - the epilepsies stakeholder community - and inviting your partnership for EAN and its activities.

YOUR PARTNERSHIP IS REQUESTED

 As we shared at the outset, the EAN is a platform for ALL stakeholders and organizations in the epilepsies space to join forces for bigger impact.

Join the Coalition here.

Register for the Stakeholder Briefing 4/18 @ 2pm ET here

If you live in WI, WV, CT or AL - join our letter campaign below.

Stay tuned for more information about a Congressional Briefing - early May.

Thank you for all you do for the epilepsies community and for your continued partnership!

EXTRA CREDIT IF YOU LIVE IN WI, WV, AL or CT!

Help contact these key Members of Congress, asking them to support our two appropriations requests during the months of April and May! Thank you!

Key Offices (+ links to contact):

Chair Sen. Tammy Baldwin (D-WI)

Ranking Sen. Shelley Moore Capito (D-WV)

Chair Rep. Robert Aderholt (R-AL)

Ranking Rep. Rosa DeLauro (D-CT)

To See If You Are a Constituent:

Visit www.house.gov. Enter your zip code in upper right corner. You may have to enter your full address if the system identified two potential members. Once you have the member, click on their website. Then click on “Contact” and enter your message (below)

Suggested Message follows (please personalize it as you like to share why improved care for the epilepsies is important to YOU):

I am writing to ask you to please support $10 million for the Pediatric-Onset Epilepsies Consortium and $5 million level funding for the National Neurological Conditions Surveillance System with the inclusion of epilepsies in the Labor, Health and Human Services appropriations bill.

With 1 in 26 Americans being diagnosed with epilepsy during their lifetime and major gaps in care and research that have been neglected for decades, these two measures will make an important difference. I am personally touched by epilepsy because ......

Please support the Pediatric-Onset Epilepsies Consortium and the National Neurological Conditions Surveillance System with the inclusion of epilepsies in the appropriations process.

Sincerely,

Your Name