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...
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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....
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"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...
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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...
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"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...
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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...
View ArticleResearch, 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...
View ArticleNew 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...
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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)...
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2022 Jordan's Guardian Angels Recap
Happy New Year! We are so honored that each and every one of you are by our side as we continue our journey toward a treatment or a cure for Jordan’s Syndrome. What a year it has been. Our community...
View ArticleInspiring Support: JGA Fundraising Event a Huge Success (PHOTOS)
We want to take a moment and celebrate the Huber Family for once again doing an incredible job of raising money for Jordan’s Syndrome research. More than $100K was raised at their Sip, Savor and...
View ArticleClick Here for Every Way to Connect with JGA!
Thanks for taking a moment to visit this quick and easy resource to get connected! Below you will find a list of resources to get you connected to JGA. Take a peek! Newsletter: Our weekly newsletter...
View ArticleJGA Ambassadors Program
Jordan’s Guardian Angels is proud to highlight our Ambassadors program! Created in 2022, JGA Ambassadors act as the point of contact for the foundation and our families in specific regions around the...
View ArticleAdvocating for Our Children
The concept of advocacy might seem overwhelming to some. In reality, as parents of a child with disability you have been advocating from the moment they were born. Remember the time they needed a...
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Meet Our Guest Blogger, Christopher Grant
The Jordan’s Guardian Angels Team is excited to introduce you to Christopher Grant from Ireland! Christopher, 15, is the older brother to Francis, 13, who is living with Jordan’s Syndrome. This past...
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2nd Annual "Shine Like Ozzie" Scholarship Winner Announced
Jordan’s Guardian Angels is proud to announce the winner of the 2nd annual Shine Like Ozzie Scholarship. Our scholarship recipient is Abigail Mayer of the University of Rochester! Right now, Abigail...
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JGA Launches Global #JGAOneInAMillion Campaign
Hello JGA families! Our 2023 global campaign "JGA One In A Million” is ready to launch and NOW WE NEED YOUR HELP! We will be using the hashtag #JGAOneInAMillion. The goal is to get as many people as...
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JGA Launches Holistic Wellness Series
Jordan’s Guardian Angels is excited to invite you to a 6-week Holistic Health and Wellness Workshop Series. The workshops for Moms will tackle everything from the definition of wellness and...
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JGA Team Members Attend Rare Disease Week on Capitol Hill
Each year on the last day of February, rare disease advocates don their zebra print and head to Washington DC to support rare disease legislation. This year Jordan’s Guardian Angels was represented by...
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Virtual Family Conference Brings Global Community Together
What a joy it was to see so many of your faces! On Saturday, March 11th, more than 85 people joined our Virtual Family Conference that brought our community together around the world. There were...
View ArticleRare Revolution Magazine Impact Report: The Impacts of Rare Disease on...
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...
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Being Othered – A New Blog from Sibling Support Coordinator Lexi Levine
I always had a feeling of being “othered.” Barry and I would just be doing normal Barry-Lexi things, and people would make them seem like such abnormal things. One way I sensed this was that people...
View ArticleTop Ways JGA Supports You
Jordan’s Guardian Angels strives to be a one stop shop for our community. We want all of our global community to feel supported every step of the way no matter where you are in your journey. We will...
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JGA Quarterly Newsletter: Incredible Research Progress as Global Community Grows
We can’t believe the Summer has arrived! It’s July already, the year is flying by. Thank you for taking a moment to read our Jordan’s Guardian Angels Quarterly Update. Here we hope you will find a...
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Follow The Call of the Disco Ball – Houston Fundraiser a HUGE Success
Candice and Tim Huber have done it again, raising over $530,000 for Jordan’s Syndrome Research. December 2, 2023 was an incredible night at the White Oak Music Hall in Houston. The event was complete...
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