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JGA Joins Coalition in Support of Seizure Safe Schools Legislation

Jordan's Guardian Angels is proud to announce we have joined The Epilepsy Foundation, The Rare Epilepsy Network, and a coalition of other organizations in support of Seizure Safe Schools legislation.

Seizure Safe Schools legislation aims to greatly improve the care and safety of students with epilepsy and seizure in schools. Currently, the Rare Epilepsy community is advocating for the passage of Sarah’s Law for Seizure Safe Schools (HB 606 in the Ohio State Legislature).

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Sarah’s Law would require:

  • Training for all school personnel in seizure recognition and first aid response as part of their professional development.
  • Sarah’s Law would also require schools to have a Seizure Action Plan for each student with epilepsy on file and available to all school employees, contractors, and volunteers who regularly interact, directly supervise, and/or transport the student.
  • It would also ensure that in the absence of a full-time nurse that at least one person at the school is trained to administer FDA-approved seizure rescue medications; and it would include a Good Samaritan Clause for those acting in good faith in accordance with the bill's provisions.

The first Seizure Safe Schools bill—the Lyndsey Crunk Act—was initiated and passed in Kentucky through the tenacious advocacy of Epilepsy Foundation Teens Speak Up! representative Lyndsey Crunk.
The Epilepsy Foundation developed a model bill based on the Kentucky law.

The model bill has five key components, with enacted laws varying by state: Requiring school personnel to complete a seizure recognition and first-aid response training; Mandating that the Seizure Action Plan is made part of the student’s file and made available for school personnel and volunteers responsible for the student; Ensuring that any medication approved by the Food & Drug Administration and prescribed by the treating physician is administered to the student living with epilepsy; Educating and training students about epilepsy and first-aid response and a Good Samaritan clause.

The Epilepsy Foundation then initiated a nationwide effort to pass the legislation in every state in the country and Washington, D.C. Passionate grassroots advocates and other national and local epilepsy organizations swiftly joined and made the initiative even stronger—enacting Seizure Safe Schools bills in 12 states so far: Kentucky, Indiana, Texas, Illinois, New Jersey, Virginia, Washington, Oklahoma, Colorado, Alabama, Nebraska, and Minnesota. Additional states have laid and passed important groundwork towards this initiative.

Epilepsy is a medical condition characterized by seizures, which are sudden surges of electrical activity in the brain, that affects a variety of mental and physical functions. It is a spectrum disease comprised of many diagnoses including an ever-growing number of rare epilepsies. Many of those diagnosed with Jordan’s Syndrome also endure seizures and Epilepsy.

Approximately 1 and 26 Americans will develop epilepsy, and about 1 and 10 people may experience a seizure during their lifetime. There are approximately 470,000 children and teens living with epilepsy in the U.S.

Published

May 4, 2022

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Partnering for the Future: JGA Teams up with Rare Epilepsy Network

Jordan’s Guardian Angels is proud to announce a brand-new partnership with the Rare Epilepsy Network (REN), one of the foremost global networks in the rare disease community.

“This partnership creates an important pathway to collaborate on research efforts impacting our families, those who have Jordan’s Syndrome or Epilepsy, and the global community,” said Jordan’s Guardian Angels Assistant Project Manager Brittany Cardoza.

Founded in 2013, REN is a volunteer network that welcomes all rare epilepsy organizations and broad epilepsy stakeholders to come together around research efforts to improve lives. REN has quickly grown to include more than 32 organizations encompassing more than 41 diseases.

Jordan’s Guardian Angels was first connected to REN through Leah Adams Deason, advocate and Mom to Ozzie who lost his battle to Epilepsy and Jordan’s Syndrome last year.

“We are incredibly grateful to join REN because we recognize the need for and the value of partnerships in the rare disease space,” Cardoza added, “and are excited to help create and share resources for our rare epilepsy families as well as the greater rare epilepsy community.”

This is the latest in a long line of partnerships JGA has recently formed, including The EveryLife Foundation, Rare Disease Legislative Advocates (RDLA), Global Genes, Rare Revolution Magazine, Patient Worthy, National Organization of Rare Diseases (NORD), Extra Lucky Moms, Rare. and more.

We are proud to join forces with these incredible organizations, making a difference in the lives of so many.

Published

March 31, 2022

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Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.