Advocate for Change

What's At Stake for Medicaid and How To Take Action

Proposed changes to Medicaid could have serious consequences for families of children with medical complexity and disabilities.

This timely and important conversation about what’s being proposed, what it could mean for your child’s care, and—most importantly—how you can make your voice heard.

Hear from three seasoned advocates: Laura Weidner, Chief Advocacy and Government Relations Officer at the Epilepsy Foundation, Roxanne Yaghoubi, Senior Director, Federal Relations and Policy at the Epilepsy Foundation, and Gabi Conecker, Co-Founder and Executive Director of Decoding Developmental Epilepsies and DEE-P Connections.

They’ll break down the legislation in clear terms, share how families like yours could be affected, and offer concrete steps you can take to advocate for your child and community. You don’t need to be a policy expert to make a difference. Come learn, connect, and feel empowered to act.

Ready to take action? Access the Epilepsy Foundation advocacy toolkit with key actions AQUÍ (see page 4).

Real Moms, Real Stories: Advocacy That Inspires

In this webinar we were joined by six incredible moms for an inspiring and down-to-earth conversation. They are all walking the path of advocacy for their disabled children.

They shared personal stories—real, raw, and powerful—about how they’ve stood up, spoken out, and made meaningful changes in their children’s lives, from navigating schools and healthcare systems to building inclusive communities.

Whether you’re taking your first steps into advocacy or simply looking for connection and encouragement, this webinar is for you. These moms show that advocacy doesn’t have to be big or loud to be impactful—it just has to come from the heart. Come listen, feel inspired, and leave empowered.

Protección del acceso poco común a tratamientos no aprobados

Advocacy is how we change the system. For families facing DEEs, insurance denials are a common—and devastating—barrier to care. But there’s something we can do about it.

In this conversation, DEE-P Connections co-founder Gabby Coniker speaks with Sarah Sultan from the Haystack Project about the Access to Rare Indications Act, legislation shaped with input from families like yours. They discuss why off-label treatments are often denied, how this bill would change that, and what you can do right now to help get it passed.

National Council on Disability Resource Page

The National Council on Disability is an independent federal agency that advises the President, Congress, and federal agencies on disability policy, but does not provide direct legal or advocacy services. This resource page links to government and community tools covering civil rights, employment, healthcare, housing, and more for people with disabilities.

Questions to Ask People Running for Office

Tips for Helping a Person with a Disability Vote

The Arc Online Election Center

A National Plan for the Epilepsies

An easy-to-use tool from the Epilepsies Action Network that helps you quickly contact your lawmakers and urge them to support the National Plan for the Epilepsies. This tool is part of a broader campaign led by EAN, which offers resources, updates, and ways to get involved. With one voice and one vision, the community is coming together to improve care, expand research, and shape a better future.

Federal Cuts Advocacy Toolkit

Created by the Epilepsy Foundation, this toolkit helps the epilepsy communities take action against harmful federal cuts. It offers background, sample messages, and quick steps—like emailing or meeting with lawmakers—to protect vital programs, research, and care.

Epilepsy Advocacy Communication Tools

The easiest and quickest way to take action is to use on of the Epilepsy Foundation’s tools to email your members of Congress about your concerns. Just enter your address and a few clicks later, you can send an email to your U.S. Senators and Representative. We strongly encourage advocates to personalize these messages by sharing information about their own experiences as a member of the epilepsy community.

We encourage you to take action on:
• Advisory Committee on Heritable Disorders in Newborns and Children
• CDC Epilepsy Program
• CDMRP
• Department of Education
• Medical Research
• Medicaid
• National Plan for Epilepsy

This article recaps a FDA Patient Listening Session on Developmental and Epileptic Encephalopathies (DEEs), where caregivers shared personal stories of hardship and hope. Organized by DEE-P Connections and the Rare Epilepsy Network, the session highlighted shared challenges, urgent needs, and the value of including caregiver voices in drug development. Their experiences underscore the importance of treatments that reflect what matters most to families facing rare epilepsies.

This article spotlights Cristina Vargas, who shares why caregiver respite is vital for parents of children with rare diseases. She reflects on the emotional and physical toll of caregiving and how small moments of self-care help her better support her children and maintain family strength. Cristina’s story is a reminder that caring for oneself is an essential part of caring for others.

In this article, Jon Scheinman shares his journey as a caregiver to his daughter Livy, who has lived with epilepsy since birth. Through advocacy, fundraising, and education efforts like Lemonade for Livy, Jon and his family have worked to raise awareness, reduce stigma, and support the epilepsy community. His story highlights the importance of resilience, self-care, and giving back to make a lasting impact.

In this story, Mary Anne Meskis shares the emotional journey of caring for her son Elliot, who lives with Dravet syndrome. She reflects on the toll caregiving has taken on her own mental health and the lessons she’s learned about the importance of self-care and community. Her experience shows how connecting with others and prioritizing your own well-being can strengthen families facing rare epilepsies.

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