Rare Revolution Magazine Impact Report: The Impacts of Rare Disease on Sibling Experience

Our community has asked a number of questions about the impacts of rare disease on the sibling experience. Now, we are happy to share this comprehensive document with you, the Rare Revolution Magazine Sibling Impact Report.

Inside, the group  takes a closer look at their findings from 52 siblings ages 8-25 from families affected by rare disease. It’s more than 30 pages, but it’s a wonderful resource for so many of our families and families across the rare disease space. Thank you, Rare Revolutions Magazine!
Read more below:


April 5, 2023


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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.


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.


March 31, 2022


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Shine Like Ozzie Scholarship Winner Announced

Jordan’s Guardian Angels is proud to announce the winner of the 1st annual Shine Like Ozzie Scholarship.
Our scholarship recipient is Mireya Rahman of Texas Christian University!
Mireya is studying to be an MD and is currently involved in two studies, in Cerebral Palsy and Epilepsy through The University of Texas at Arlington and TCU School of Medicine/Cook Children’s Hospital respectively.
“Being on the forefront of research into fields largely misunderstood provides great potential to pave the way for future patients when it comes to lessening the burden of their diagnosis through medical intervention as well as social normalization,” said Rahman.
This $1,000 scholarship is for a student (undergraduate or postgraduate) studying anything related to Epilepsy. This year, in its infancy, the Shine like Ozzie Scholarship had 15 applicants which is above and beyond anything Jordan’s Guardian Angels anticipated. We are so very grateful the rare disease community came together to spread the word and apply.
Many members of our Jordan’s Syndrome community suffer from Epilepsy and debilitating seizures. That’s why research on Epilepsy is so important to us. It’s why we have joined the Rare Epilepsy Network, a partnership we are immensely proud of.

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Most importantly, this scholarship is in loving memory of Ozzie Deason and all the other children our community has lost. Ozzie lost his life last year after a battle with Epilepsy and Jordan’s Syndrome.
“The Shine like Ozzie scholarship is extremely meaningful to our family for so many reasons. Epilepsy ravaged our daily lives and stole so much from Ozzie, and we understand how critical it is for families to find the appropriate Epilepsy care,” said Leah Deason, Ozzie’s Mom. “We are overjoyed to know this scholarship will go toward training Epilepsy focused doctors which the Epilepsy community desperately needs. We hope that Ozzie’s story will fuel the desire to help other children like him and be a guiding light in educating others on the importance of ending Epilepsy.”
We hope to continue this tradition for years to come with new applications open annually on Ozzie’s Birthday. May his light and the light of all of our children forever shine.


February 28, 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.