Rally for Raegan

05/04/2026

Camp Carpe Diem by Children’s Healthcare of Atlanta!

It’s important that every child feel special, and a child with epilepsy or seizure disorder is no different. At Camp Carpe Diem, we promote positive self-esteem with fun and learning. We give every child the chance to experience camp, build friendships and make memories to last a lifetime.

Camp Carpe Diem is a week-long summer camp for kids ages 7 to 18. Started in 2010, Camp Carpe Diem is a place where our patients can get outside, play, learn and make friends with kids who understand what it's like to live with epilepsy.

Camp Carpe Diem is a place where our patients can get outside, play, learn and make friends with kids who understand what it's like to live with epilepsy.

04/28/2026

Sudden Unexpected Death in Epilepsy (SUDEP) is a fatal complication of epilepsy. It is defined as the sudden and unexpected, non-traumatic and non-drowning death of a person with epilepsy, without a toxicological or anatomical cause of death detected during the post-mortem examination.

There are no devices available that have been proven to prevent SUDEP. Yet, since SUDEP most often occurs during sleep, some people with seizures at night may be helped by having a way to let others know if a seizure occurs. Ideally, they could get help more quickly. Here’s some common questions and information about seizure alerts.

The devices can notify nearby family or caregivers when a seizure occurs through alarms, phone calls or text alerts, depending on the device. A caregiver can then help the person during and after the seizure. For example, they can help reposition the person, making sure they are on their side if they are not conscious. They can also make sure someone doesn’t fall asleep on their stomach afterwards. If breathing or other problems occur, they can call for medical help. They may also be able to give rescue medications or call for an ambulance if the seizure lasts too long or the person has repeated seizures.

This week, we received Raegan's Epilepsy Sleep Monitor! We ordered the PulseGuard system from the UK. We learned during a VEEG Sleep Study last year that Raegan's activity is higher at night. In addition to this, most of her seizures are not outwardly evident.

The PulseGuard system was developed for people like Raegan and families like us!

In the UK alone there are 600,000 people with epilepsy, that’s nearly 1% of the entire UK population. 70% of these are children who experience silent seizures often also with no movement, preventing them from being able to use standard seizure detection alarms which are based on these symptoms. PulseGuard does not monitor these symptoms but instead monitors the heart rate, enabling it to alert users and carers if the heart rate increases or decreases with no other visible evidence.

Source(s):
https://pulseguard.org/about-us/
https://www.epilepsy.com/article/2014/3/nighttime-seizure-activity-will-your-family-ever-sleep-peacefully-again

04/22/2026

Urge Congress to Protect Students with Disabilities!

http://www.votervoice.net/Shares/BMzUsAC-ACQ5eAXHheh7FBA

My message: My name is Kourtney, and I’m writing to you as both a constituent and a mother to a child with complex medical needs. For my family, school is not just about academics—it’s about safety, stability, and ensuring my child has the support she needs to function and thrive each day.

My daughter, Raegan, depends on structured support, accommodations, and a team that understands how her medical condition impacts her ability to learn. Plans like IEPs and 504s are not optional for families like mine—they are what make education accessible in the first place. Without them, children with disabilities are left to navigate systems that are not built for their needs.

The idea of weakening or dismantling the U.S. Department of Education is deeply concerning. Federal oversight is what ensures that children like mine are protected no matter what state they live in. Without it, those protections become inconsistent, and families are left to fight battles that should already be guaranteed by law.

This is not just about policy—it’s about whether children with disabilities will continue to have equal access to an education and the support services they rely on every single day. Losing those safeguards would not just disrupt learning, it would put vulnerable students at risk of being left behind entirely.

I am asking you to protect the systems that protect our children. Please oppose efforts that would weaken or dismantle the Department of Education and uphold the rights of students with disabilities to receive the education and support they deserve.

04/22/2026

Support S. 935 - Seizure First Aid Signage in South Carolina!

https://www.votervoice.net/mobile/EFA/Campaigns/134947/Respond

Legislation has been introduced in South Carolina (S. 935) that would require the Department of Public Health to develop a pamphlet or poster for state governmental entities on seizure first aid. These state governmental entities would be required to display this information in a visible and frequently visited location. The legislation could have a positive impact on the safety of not just those state employees with epilepsy, but everyone in the workplace, including fellow employees and possibly even constituents.

Legislation has been introduced in South Carolina (S. 935) that would require the Department of Public Health to develop a pamphlet or poster for state governmental entities on seizure first aid. These state governmental entities would be required...

04/22/2026

Take action to support the National Plan for Epilepsy:

http://www.votervoice.net/Shares/BMzUsAC-ACXHdAZAheh7FBA

My message:

My name is Kourtney, and I’m writing to you not only as your constituent, but as a mother raising a child with epilepsy. For families like mine, epilepsy is not occasional or abstract—it’s constant, unpredictable, and something we have to plan our entire lives around.

My daughter, Raegan, depends on specialized care, consistent monitoring, and access to providers who truly understand her condition. Even with that, there is always an underlying fear—of breakthrough seizures, of complications, and of outcomes we can’t fully control. One of the most devastating realities within the epilepsy community is SUDEP, and it’s something no parent should have to learn about the way we do—through risk, not prevention.

Right now, support for epilepsy feels fragmented. Families are left to navigate complex systems on their own while trying to keep their loved ones safe. A coordinated national plan would bring much-needed structure, accountability, and progress—so that care improves, research advances, and fewer families have to live with the same level of uncertainty and risk.

This isn’t just about awareness. It’s about building a system that actually supports people living with epilepsy at every stage—from diagnosis to treatment to long-term outcomes. Families like mine need more than temporary solutions. We need a clear, committed path forward.

I’m asking you to support the development and implementation of a National Plan for Epilepsy so that families like mine are no longer navigating this alone.

04/22/2026

Ask Your Elected Officials to Join the Congressional Epilepsy Caucus!

04/21/2026

FYI (Georgia Specific)

After an IEP is approved, educators are LEGALLY BOUND TO FOLLOW THE PROVISIONS OUTLINED IN THE IEP. Including necessary services AND accommodations! The IEP serves as a legally binding document. Educators MUST adhere to the requirements to comply with IDEA (Individuals with Disabilities Education Act).

Georgia laws ensure that children with disabilities receive individualized, LEGALLY PROTECTED EDUCATIONAL SERVICES, with clearly defined team roles, content requirements, transition planning, and procedural safeguards aligned with Federal IDEA standards.

Georgia IEP laws are governed by both federal and state regulations. Georgia follows IDEA 2004 Framework. This mandates that public agencies provide FAPE (Free Appropriate Public Education) to eligible children.

Georgia law requires that each IEP includes:

• Present Level of Academic Achievement and Functional Performance (PLAAFP)

• Annual goals

• Accommodations, modifications, and related services

• Assistive technology & accessible instruction materials

• Least Restrictive Environment placement

• Progress measurement and reporting schedule to parents

• If behavior plays a part then Functional Behavior Assessments and Behavior Intervention Plans are drafted to address them.

04/21/2026

How Can You Become an Epilepsy Advocate?

Through public policy, legal advocacy, and grassroots engagement, you can raise awareness about the issues affecting the epilepsy community and seek positive change. At the Epilepsy Foundation, our advocacy priorities include:

* Ensuring access to quality health care that is affordable, physician-directed, and person-centered
* Ending epilepsy-related discrimination and protecting the rights of people with disabilities
* Raising awareness and promoting education about the epilepsies
* Fostering biomedical innovation by incentivizing the development of new therapies and the promotion of research

Whether you realize it or not, you’re the expert. You know first-hand the challenges that come from living with epilepsy. Without speaking up and telling your story, elected officials may never know what epilepsy is or what issues are important to you. At the Epilepsy Foundation, we can support you with the tools and resources you need to be an effective advocate.

There are many ways to get involved as an epilepsy advocate. Learn how to join the cause and raise awareness about the issues affecting the epilepsy community.

04/21/2026

Reminder - YOU are your child’s advocate. Always. And sometimes, that’s means you have to apply what should be considered an unnecessary amount of pressure!