Inspired by Reagan “Rea” Monast, who lives with intractable epilepsy, the Rea of Hope for a Cure Foundation was founded by Reagan’s mom and biggest advocate, Erin Monast. Rea of Hope is an awareness and advocacy nonprofit that aims to support and connect families of children with complex neurological disorders, specifically epilepsy, in Chester, Delaware, and Montgomery counties.

 

Epilepsy is a diverse group of neurological disorders characterized by recurrent seizures. It is estimated that one in twenty-six people will be diagnosed with epilepsy in their lifetime, and approximately 16,900 children in the state of Pennsylvania are living with this condition. Tragically, there is no cure for epilepsy.

 

Reagan’s Story

Rea was born on October 15, 2011, and had her first documented seizure at just 16 months old on March 3, 2013. Within months, she was diagnosed with both epilepsy and Cerebral Palsy. The years since have been filled with countless seizures, hospital visits, medication trials, and other challenges.

 

Despite these immense difficulties, Reagan has maintained an inspiring resilience and positivity. She has become an advocate not only for herself but for other children living with epilepsy, using every opportunity to educate others and spread awareness. In November 2023, Chester County proclaimed November as Epilepsy Awareness Month, and Reagan traveled with her family to happily accept the proclamation.

 

Although Reagan has experienced periods of seizure freedom, often due to the ketogenic diet, her family’s wish is for a cure – not just for Reagan, but for everyone affected by this devastating neurological disorder.

 

Why Rea of Hope?

As a parent, Erin Monast has witnessed firsthand the isolation, challenges, and debilitating impact an epilepsy diagnosis can have on a family. The Rea of Hope for a Cure Foundation aims to provide a safe space for families to connect and know they are not alone in their journey.

 

Together, we, as a community, must continue to raise awareness, advocate for better treatments and a cure, and support the epilepsy community. By sharing Reagan’s story and the mission of Rea of Hope, we can bring hope to those affected by this complex neurological condition.

 

Rea of Hope & Nemours

 

Nemours Neurology and the Rea of Hope for a Cure Foundation have teamed up to offer parent support groups. These groups provide a welcoming space for parents to share experiences, exchange resources, and receive emotional support. Together, their aim is to foster community and connection among families navigating similar challenges. If you’re interested in joining, start by filling out their interest form!

 

Reagan’s Run for Ella

The 3rd Annual Reagan’s Run, a 5K, 1 Mile Walk, and Kids Dash will occur on Sunday, September 15, 2024, at Wilson Farm Park.

 

Reagan’s Run aims to raise awareness and funds for epilepsy research. Get ready for a fun-filled, family-friendly event! There will be a raffle table, snacks, and, most importantly, lots of smiles! This is a perfect opportunity to spend quality time with your loved ones while supporting a great cause.

 

Proceeds will go to Rea of Hope and CURE Epilepsy (Citizens United for Research in Epilepsy), whose mission is to find a cure for epilepsy by promoting and funding patient-focused research. Reagan’s Run has raised nearly $70,000 since it began in 2021, which has gone directly to epilepsy research.

 

This year, organizers have updated the name to honor Ella Godbout, a Downingtown teenager, family friend of the Monasts, and legend and epilepsy warrior. You can learn more about how the Godbout family is honoring Ella, with their organization Ella’s Gifts.

 

Read about another local epilepsy warrior.