2022

2nd Annual "Shine Like Ozzie" Scholarship Coming Soon

Jordan's Guardian Angels is proud to announce the 2nd Annual "Shine Like Ozzie" Scholarship. Opening December 31st, 2022, this $1,000 scholarship is for a student (undergraduate or postgraduate) studying anything related to Epilepsy.

Last 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, and we are hoping to expand further this year.

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.

Most importantly, this scholarship is in loving memory of Ozzie Deason and all the other children our community has lost. Ozzie lost his life 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, December 31st. May his light and the light of all our children forever shine.

Applications close January 31st, 2023, and the awardee will be announced on Rare Disease Day, February 28th, 2023.

Uncategorized - 12/02/2022

New Jordan's Syndrome Publication Released

A new publication produced by some of the most respected geneticists in the world including Dr. Ghayda Mirzaa, Dr. Wendy Chung and Dr. Veerle Janssens from our very own research team provides new insight into Jordan’s Syndrome.

The study documents 76 cases of Jordan’s Syndrome and provides new details into the genetic mutation.

The publication details a significantly expanded series of individuals with PPP2R5D variants enabling the experts to better characterize the association of this gene with neurodevelopmental disorders, neurobehavioral issues and other notable clinical features, as well as further our understanding of the molecular function and biochemical properties of causal PPP2R5D variants.

The clinical, molecular and functional data from this study could have important consequences for clinical evaluations and aid in the future treatment for affected individuals.

Read the full publication here.

Listen to or watch our new podcast as Dr. Mirzaa and Carole Bakhos take a deep dive into the new publication.

Uncategorized - 11/14/2022

Research, Research, Research!

Our 2022 Family Conference was incredible not just because we had the opportunity to come together, but because we had to in order to move our research forward. An incredible amount of data was collected.

Sean Calamia, of Dr. Wendy Chung’s team at Columbia University, is one of the many individuals leading the efforts in collecting data for the Jordan’s Guardian Angels Natural History Study. As we wrapped up conference in July, the JGA Team asked Sean to give a rundown on the data collection process and its impact on future clinical trials. Here’s a look:

What is the purpose of collecting clinical data?

1. To better understand and to see the phenotypes, or observable traits, of the genetic disease. If we see a symptom present in greater numbers of people, we have a better idea of what is going on. Conversely, if we see less consistency of a phenotype within the population, then we can readjust.

2. It is required for clinical trials. A few years ago, the FDA made data a necessity for drug development and treatment. Therefore, for us to move forward with gene therapy as well as receive funding and approval for clinical trials that aim to treat a rare disease, we need to collect the data and understand the impact of the genetic misspelling. It could be systematic or molecular and we need to be able to identify what we expect to target and what we expect will change. Since rare diseases have a smaller population of people to collect data from, the FDA even more so wants us to have a good robust cohort for information, which makes it critical for us to do things as soon as possible.

What is the significance of this past Family Conference?

At our July Family Meeting, we got about 50 participants enrolled in the study, which is a great number. Depending on how big of a population is needed for rare diseases, it may be enough to move forward with clinical trials.

What are the immediate next steps after the Family Conference?

We just finished collecting the data and are planning to clean and process it.

What is the timeline for clinical trials?

We first want to make sure we are coming up with multiple avenues of therapy to rescue the rare disease. The scientists and physicians from the conference want to spread out resources across the potential avenues of therapy after the data has been processed.

What is the Natural History data?

It captures what is going on in a patient’s life at this point. For other studies, there is an online Natural History Study which is more of a medical history study that personally accounts for what is going on in the patient’s life. We are developing a new version for approval that we hope to use for Jordan’s Syndrome population within the next six weeks or so.

What are some updates on the Natural History Study?

The data has been collected, which makes up a large part of the work, but will still be continued. Usually, data for the Natural History Study is collected once a year as we do not expect to see significant changes through frequent collections. Since it is a longitudinal study, data will be collected until we reach clinical trials and even past that. With previous findings, we have learned a lot such as that some things are not having the negative impact we hypothesized, which is very good news.

What have been some barriers to data collection?

Funding the trip is a barrier since the data collection occurs at Columbia University and we do not want families to have to financially support the case and fund their trip. There was never a problem in finding participants or getting families motivated as the families have always been unbelievably motivated to contribute.

What is a take-home message for all the families?

While we may not be at the point of clinical trials or have therapies to be tested right now, our current priority is to get all the Natural History data set up for those goals. The best thing you can do right now is to share all the information you have.

Thank you to Sean for all of his insight and to our entire research team for their tireless efforts to find a treatment or a cure for Jordan’s Syndrome.

Research - 09/21/2022

Top Rare Disease Honor Given to JGA Founders

Global Genes, a leading rare disease patient advocacy organization announced its annual Rare Champions of Hope Awards September 13th in San Diego, California. The night’s top honor went to the Rare Founder Award recipients Cynthia and Joe Lang, Co-Founders of Jordan’s Guardian Angels.

The RARE Founder’s Award recognizes those who exhibit commitment to connecting, empowering and inspiring the rare disease community through lifetime contributions and achievements advocating for people living with rare disease.

“What can we do for our children?” asked Joe Lang to parents in the room during his acceptance speech. “You all truly are the champions of hope and maybe most importantly our children themselves. They are the hope, the hope that we have and the hope we carry with us in all of these efforts,” Lang said.

We are so proud of our Founders and the tireless work Cynthia and Joe put forward every day. Thank you is never enough, but we are grateful to Global Genes for recognizing the incredible hope they bring to our community and the world.

Read JGA’s press release here.

Read the Global Genes press release here.

Our Global Community - 09/14/2022

"The Sky is the Limit": JGA Families Come Together for Family Conference

We came, we saw, we danced, we hugged, we shared stories, we moved the research forward. The 2022 JGA Family Conference is in the books and what a weekend it was!

65 families came together in person in New York City at the TWA Hotel for a necessary gathering to move our Jordan’s Syndrome research forward toward clinical trials. 70 blood samples were collected, 50 clinical data points were gathered, and 30 EEGs were taken. A huge success!

Equally as important, our families were able to spend time together, share their stories, meet with the research team members, and learn as much as possible from each other and from our experts.

Many thanks to the TWA Hotel team for making our stay run smoothly, to Corporate Kids for making sure the kids were safe and had a blast, to Seattle Children’s and Simon’s Searchlight, THANK YOU SO MUCH!! And to Columbia University without whom none of the research aspects of conference would have happened, you are nothing short of incredible.

To our families, thank you for coming to New York from across the globe or tuning in on your home computers to take part. And to our unbelievable research team, you mean everything to all of us. Thank you for all that you do every single day, for taking the time away from your families to be with us for this weekend and for going above and beyond. We cannot wait to plan another conference and see all of your faces once again!

Important Links:

JGA Family Conference Recap Video
Jordan’s Guardian Angels Research Update 2022: The research update that was made available in our conference binders is now up on our website in The Resource Center. Please take a moment to read through and bring yourself up to speed on the latest information. Click here for more.
Family Conference YouTube Links: Here are the links to YouTube where you can watch all of the conference sessions you may have missed or want to watch again. Translation services are also available here.

Family Conference Merchandise: Now is your chance to get your hands on some Family Conference swag :) If you weren’t there in person or would like additional t-shirts etc. CLICK HERE to order. There are several new styles including long sleeve for you to purchase and they ship anywhere in the world! Happy Shopping!!

Conferences - 08/23/2022

A Day to Shine Like Ozzie

April 26, 2022 marked Ozzie Deason’s first Angelversary, or one year since he passed away. On that day, friends, family members and the rare disease community came together to honor Ozzie’s memory with acts of kindness.

Ozzie’s parents Leah and Prime Deason marked the occasion on social media asking everyone to do something kind for others to mark the day. They also created a special Spotify playlist and handed out Blessing Bags filled with water, snacks and toiletries. Well, their request for kindness was answered in a BIG way.

Here’s some of Leah’s grateful post on social media:

“I don’t even know where to begin! It’s taken me a few days to decompress and soak it all in because it was such an emotional and joyful day! If you followed along on Tuesday, then you noticed my stories overflowing with nonstop shares from people participating and spreading joy to others through selfless acts of kindness. I wish I could share every single picture, but there are just too many. I saved everything in a highlight to revisit, so please check it out if you need a good dose of happy and to know that there are so many good things happening even during such dark times.

Here’s a tiny glimpse of what people did in memory of Ozzie:

☼ Handing out blessings bags
☼ Donations to various charities
☼ Gift cards sent to friends
☼ Paying it forward at coffee shops, smoothie bars and so many other places
☼ Lots of love to teachers, classrooms, secretaries and interventionists in the way of breakfast, snacks, thank you notes and supplies
☼ Goodies to healthcare workers, children’s hospitals, EMU patients, Ronald McDonald House families and fire stations
☼ Generously paying hotel bills for staff
☼ Handwritten notes placed in mailboxes of strangers
☼ Leaving large tips for service
☼ Handmade wreath delivered to the sweetest 95 yo lady who is home bound (her smile was so big!)
☼ Treats for Doggy Daycare
☼ Acts of self-care (being kind to yourself is a big deal!)
☼ Reading to kids at local libraries

I’m sure I missed many, but as you can see it was a day full of love and hopefully lots of smiles! It was such a special day, and I can’t thank everyone enough for honoring our sweet Ozzie. I think this is going to be our new tradition. I’m already looking forward to 4/26/23. From the bottom of our hearts, THANK YOU. It’s clear that Ozzie’s light is still shining bright for all the world to see!”

A huge thank you for all who participated and showed the Deasons so much love on this difficult day. We are so grateful for a supportive and compassionate community that comes together in the most wonderful ways. May Ozzie’s light continue to shine and bring out the best in people now and always.

Our Global Community - 06/09/2022

"Let's Blow Out Jordan's Syndrome": Event Raises Thousands for Research

It was a night to remember in Arizona last month, as Nancy De Orta and family put on an incredible fundraiser benefitting Jordan’s Guardian Angels! Together with their guests, more than $15,000 was raised and will go directly toward Jordan’s Syndrome research!

Guests enjoyed blow outs, great music, incredible décor and much much more and to top it all off, guests were outbidding each other just so that they could gift Avianna with the prize she was hoping for… check out what she took home below!

Nancy thanked all of the generous donors on social media saying, “We are beyond blown away by the love and support that you all have shown us not just at this event but throughout our journey. Thank you for helping us fight to find a cure/treatment! Thank you for being our angels.”

A big thank you for to the following sponsors for their generosity:
-Limitless Charcuterie
-Tony Camacho Photography
-Anthony Jensen (AKA DJ YKNOT)
-ICStrategy
-Tara at Scout & Cellar
-Bespoke Salon

From all of us at Jordan’s Guardian Angels, THANK YOU THANK YOU THANK YOU! We couldn’t do what we do without all of you!

Events / Our Global Community - 06/02/2022

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).

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.

In The News - 05/04/2022

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.

In The News - 03/31/2022

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.

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.

In The News - 02/28/2022

2nd Annual "Shine Like Ozzie" Scholarship Coming Soon

Published

New Jordan's Syndrome Publication Released

Published

Research, Research, Research!

Published

Top Rare Disease Honor Given to JGA Founders

Published

"The Sky is the Limit": JGA Families Come Together for Family Conference

Published

A Day to Shine Like Ozzie

Published

"Let's Blow Out Jordan's Syndrome": Event Raises Thousands for Research

Published

JGA Joins Coalition in Support of Seizure Safe Schools Legislation

Published

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

Published

Shine Like Ozzie Scholarship Winner Announced

Published

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