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 with a silent and live auction, a design your own cowboy hat bar, food, drinks and it all finished under the disco ball where hundreds of people turned out to hear The Broken Spokes and country music star Clay Walker perform! It was a night to remember! 

From the Hubers and all of us at JGA we want to give huge THANK YOU to: 
-The Stier Family
-The Young Family
-Larry & Sally Fogg aka Mawmaw and Paw to Hutton & Leighton
-Bobby & Heather Anderson 
-Fabian Torres 
-Jeremy & Katie Morgan 
-Hamby Family
-Dave Wolf for arranging the beautiful Balenziaga & Gucci Purses in the auctions
-David Adkins & Jennifer Lucio w/ Martha Turner Sotheby’s 
-Kaustubh Daige & Larry Fogg w/ The Generator House
-Kevin Scroggins & the Santas Elves Foundation 
-Kim Hardy & Amy Webber for the beautiful flower arrangements
-Magness Orthodontics
-Matt & Josh Carr w/ California Marine Cleaning 
-Mona w/ Lashes Plus
-Juliette Breeze w/ Next Level Urgent Care
-Nadia Banegas w/ Pug Balloons        
-Shannon Strickler at Del Monte Reality 
-Trent Henry at TMS Roofing 
-Jesse Brown w/ Optimal Fundraising
-John Collado and the entire USI crew 
-Greg Janese at United Talent Agency 
-Katie & Mark White Oak Music Hall 
-Mari Dashawn & Kristina Rossenwasser w/ Da Rose Hat Bar (IG:@de.rose.shoppe.hatbar)
-Rylie Falwell for her amazing live painting (IG:@ryliecaldwellart)
-Vanicka Terhune for her amazing live painting (IG:@vanickaj)
-The Broken Spokes for another fantastic performance (brokenspokesmusic.com)
-AND thank you to all of our JGA Families who attended 

Scroll down to see all of the pictures from the event! 
Fundraising is a vital part of Jordan’s Guardian Angels, especially this year as we get set to begin human clinical trials. We hope that ALL of our JGA families will fundraise in some way this year. Big or small, every dollar counts! If you would like help with your fundraiser, email Candice Huber, Family Engagement Coordinator at chuber@jordansguardianangels.org
Thank you Team Huber for all that you do! We LOVE you!

Check out all of the event photos!


January 31, 2024



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 window into the incredible progress this group is making on so many levels.
Our community is growing, our research is evolving in leaps and bounds and we have never been closer to a treatment or a cure for Jordan’s Syndrome.
Thank you for being a part of our family and for taking the time to be involved. We are so appreciative of the support you and your families provide.

Research Update

Jordan’s Guardian Angels is in the midst of a very exciting time as we are closer than ever to finding answers. We are now just months away from beginning targeted clinical trials. Families from around the world are continuing to provide their data and answer surveys with Simons Searchlight and our research team to better understand Jordan’s Syndrome and what it does.
Currently, our research team is working diligently on a deep dive into the basic science to understand the genetic mutations on a micro level. Mice clinical trials are also ramping up using 3 different compounds targeting different symptoms of Jordan’s Syndrome. A clinical trials team is hard at work right now designing the trials in preparation for human clinical trials using one particular compound that has shown to improve cognition when administered to mice.
It's more important than ever that we continue our fundraising efforts as we are getting closer and closer to what we have all been waiting for… an answer for our families and to see the impacts this research has on the world.

Our Global Community

We are continuing to grow every single week here at Jordan’s Guardian Angels. We are thrilled that our new families are finding us and now have a new and supportive home. Our community is now more than 380 families strong and growing all the time.
To make the transition into our community run smoothly, we now have a fully staffed Ambassador Program for our families to utilize. These specially trained individuals are all part of our global family here to help new families and current families with navigating JGA. The program is designed to help our families in their language in their region of the world to help make the transition run smoothly. The Ambassadors have created regional Whatsapp groups and Facebook groups and texts threads to provide support for our families.

We are so grateful for the work they do.

JGA "One in a Million" Campaign

This year, we have launched a brand-new fundraising campaign aimed at raising ONE MILLION DOLLARS for our children who truly are one in a million. The goal is simple, to get as many people as humanly possible to donate one dollar today. One dollar, one time and we grow from there. All of the funds go directly to Jordan’s Syndrome Research. Watch this video to learn more!

Here are three easy places to donate today:
Venmo: venmo.com/JordansGuardianAngels
PayPal: https://www.paypal.com/donate/?hosted_button_id=KXPNGTHTDT5TC
JGA Site: https://jordansguardianangels.org/get-involved/
We are #JGAOneInAMillion! 

If you have any questions, please contact Candice Huber: chuber@jordansguadianangels.org.

2024 Family Conference

Summer 2024 is our targeted date for our next Family Conference! We are very excited to have everyone together again and to be able to continue gathering valuable information for our research efforts. More details are to come on specific dates and a location. Stay tuned!


Jordan’s Guardian Angels is expanding its partnership with the Rare Epilepsy Network. Our Director of Outreach and Content Development, Christina Janes is now a member of their Coordinating Committee.
REN welcomes all rare epilepsy organizations and broad epilepsy stakeholders to come together around research efforts to improve lives. This partnership is something we are extremely proud of as REN is one of the foremost global networks in the rare disease community. We look forward to a long and fruitful partnership.

Tech Update

ALL of our social media channels recently underwent a major tech overhaul. Under careful and targeted guidance, we are growing our digital footprint and could use your help in aiding that growth.
Help us to grow our social media. Click the links below to “follow” our journey. One click makes a big difference!

Family Involvement

We are so excited to highlight an incredible Jordan’s Guardian Angels Mom who continues to spread the word about Jordan’s Syndrome every day. Michelle Fruhschien is Mom to Hailey who is living with Jordan’s Syndrome. She’s also an incredible advocate and social media aficionado. Michelle has joined forces with Extra Lucky Moms to spread the word about our community.
Extra Lucky Moms continues to be a great JGA partner, this group helps to remind us daily that we are extra lucky to be the parents of children with special needs. The founders created this group as two moms who want to share the joy that comes with being a disability mom.
They have since published a book Dear Mama: Stories of an extra lucky life, a compilation of letters from moms in the disability community. Michelle was chosen as one of those Moms to share her story. We are so proud of her, of all the good she’s bringing to the world and her continued efforts to shed light on Jordan’s Syndrome and Jordan’s Guardian Angels. Thank you Michelle for all you do!

Thank You!

From this global family pictured above to you, THANK YOU!

As we always say, we couldn’t do this without all of you. Our journey is now your journey, and as we find a treatment or a cure for our children, we could very well unlock some of the world’s greatest medical mysteries… Parkinson’s, Autism, cancer, Alzheimer’s and more that could impact you or someone you love. We are so thankful for all of you, your dedication, donations, support and guidance.

From all of us here at Jordan’s Guardian Angels, THANK YOU!


July 13, 2023



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 were always taking pictures of us, when we would be hanging.

In retrospect, I’m extremely grateful for that now, to have so many beautiful memories of us. But at the time it would feel like people were acting as though me being his sister was some extraordinary act of bravery or something. Often, when I would post about him, people would comment about how great of a sister I was. While it was nice to hear, it felt “othering,” because I was treating him the same way I treated my sisters- with unconditional love. I always felt like it was because Barry was disabled; people were just shocked that we were so bonded.


I think what I want people to know is that even though the way we were close- the way we played and the frequency of hugs, kisses, and “I love yous,” were different from typical sibling relationships, we really weren’t that different. If your sibling became ill, wouldn’t you do whatever you could to get them the best care, and to make sure you maximize your time with them?

An example of this, was the only time Barry ever went to the grocery store. We get into the grocery store, and it’s impossible to maneuver Barry around the displays and people, so I decide to bring him to the front of the store and just wait for my mom. So we were just sitting there, laughing and playing- doing those normal Barry- Lexi things, when all of a sudden the manager of the store came up to us with a plant, and said that he had been watching us, and he thought it was so beautiful how we were playing that he wanted to give us this plant. I thanked him, but honestly my first thought was well that’s creepy. I wondered if we had been a “typical” sibling pair if the manager would’ve had the same response. I know this came from good intentions, but it was just another reminder that Barry was different.
**Lexi Levine is JGA’s Sibling Support Coordinator. She’s sister to Barry who passed away in 2015. Lexi’s insightful takes on life with a sibling with Jordan’s Syndrome are always a favorite of our families around the world. Read more about Lexi here.


April 20, 2023



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 Sibling Support Coordinator, Lexi Levine and Director of Advocacy and Engagement, Brittany Cardoza. Here’s Brittany’s recap of the events:

Rare disease week on Capitol Hill has always been one of my most favorite gatherings, second only to seeing everyone at family conference! This year I was thrilled to attend with another JGA team member, allowing us to bounce ideas off one another and meet with twice the number of Congressional offices. Each year kicks off Monday with a day with Food and Drug Administration, followed by a day at the National Institute of Health’s campus, a day of panel discussions and breakouts led by Rare Disease Legislative Advocates, and finally a day of hill meetings.

Prior to the last week in February, Rare Disease Legislative Advocates, an arm of the EveryLife Foundation for Rare Diseases, spend weeks meeting with rare disease caucus co-chairs, and compile legislative asks that benefit the entire rare community.

This rare disease week was the first one back in person since the arrival of the Covid-19 pandemic, and the rare community showed up in a big way - over 600 advocates attended 300 meetings!

“During their Hill meetings, rare disease advocates asked their Representative and Senators to support appropriations for critical rare disease programs in FY24, cosponsor the BENEFIT Act, sign a Congressional sign on letter to FDA requesting a formation of an FDA task force, and join the Rare Disease Congressional Caucus. “- Rare Disease Legislative Advocates

Rare advocates are arranged into meetings by state and meet with Senate and House members alike. Lexi and I represented New York and California, and together were able to visit the offices of Senator Feinstein (CA), Senator Padilla (CA), Representative Matsui (CA), Representative Schiff (CA), Senator Gillibrand (NY), Senator Schumer (NY), and Representative Garbarino (NY).

If the thought of attending the rare disease week panels and advocating seems overwhelming to you, I understand. Just four years ago I attended my first rare disease week solo, having some concerns about picking up the terminology and feeling qualified to speak on behalf of our Jordan’s Syndrome community. In those moments I recall the words of our podcast host Christina Janes, “Sometimes it’s scary to try something new- do it anyway.” If after that I’m still in doubt, I think of our families, and the systemic challenges they face every day. They did not sign up to be advocates but have assumed the role since the day their child was born.

Luckily, there is a lot of support given to advocates along the way. The first two days of rare disease week serve to understand government agencies, the next day is a deep dive into every legislative ask and breakout rooms to teach you how to share your story. (Lexi was a panelist for the Young Adult Rare Representatives- watch her presentation here.) On the day of your hill meetings, Rare Disease Legislative Advocates appoint one seasoned advocate to attend each meeting, so that no one must attend on their own.

For me, the most touching and empowering part of the week is witnessing the connection between the policy advisors and the advocates. Policy advisors have numerous meetings with constituents daily, but I can’t imagine all are as important or moving as the meetings I attended. Rare disease does not discriminate between gender, culture, or political party. To bear witness to people who have nothing and yet everything in common, coming together to share their story in the name of advancing the rare community is powerful.

In one of my Senate meetings a father was educating a policy advisor on The BENEFIT Act,
(This legislation would require FDA to provide a description of how patient-experience data was considered in its risk-benefit framework. Patient experience data can include patient reported outcomes, testimonials, patient preference data, and natural history studies.)

When they locked eyes as the father said, “I used to lie awake worrying if the science would ever be advanced enough to help my son. Now, I don’t worry about the science, we know that’s there. I worry about whether a treatment will be approved in time. Please pass this sentiment along to the Senator, so I don’t have to worry about what will happen to my son when I leave this earth.”

If you think sharing your story isn’t enough to make a difference, that it won’t matter- I promise you that it does.

Are you ready to stand up and make a difference for individuals living with rare disease?  At Jordan’s Guardian Angels we coordinate an Advocacy Subcommittee, have an advocacy one sheet to share with your representatives, and connections to many rare disease warriors eager to make your voice heard. Every voice matters. I can’t wait to hear yours.
Contact Brittany at bcardoza@jordansguardianangels.org.

Find legislative asks and recordings of Rare Disease week here.


March 16, 2023



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 misconceptions about the topic to several holistic health modalities meant to help you improve your everyday life.

There are only 8-10 spots per session and they will go fast… so click here to sign up now!

Holistic Health Flyer JPEG


March 3, 2023


#OneInAMillion - 1

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 humanly possible to do one simple thing: donate a dollar to JGA.

It’s literally that easy to share and help!

This campaign platform will be attached to all fundraising efforts throughout the year, with all of the donations compiling toward the ultimate - lofty - goal of raising one million dollars!! SO LET'S GO!

Click the link to learn more!


#OneInAMillion - 1


March 3, 2023


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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 is investigating the signaling role of the PPP2R5D-PP2A holoenzyme and its human de novo mutations in the central nervous system. “Neuroscience is a complex field with a wide range of topics and this vastness of research drew me in,” said Mayer. “Proper brain function is vital for human life, but there is still so much unknown about all the processes in the central nervous system.”

Mayer is also working directly on Jordan’s Syndrome research, and she says the families truly make a difference for her.
“A strong connection to patients and the ability to listen to their greatest worries to guide our research is an experience that has shaped my career as an academic researcher,” said Mayer. “This connection has given me motivation to work hard with intense rigor and reproducibility, so my work has greater potential to help those children.”

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This $1,000 scholarship is for a student (undergraduate or postgraduate) studying anything related to Epilepsy. This year, the Shine like Ozzie Scholarship had 5 incredible applicants.
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 2 years ago after a battle with Epilepsy and Jordan’s Syndrome.

“We are overjoyed to know the Shine Like Ozzie scholarship will go toward training Epilepsy focused doctors which the Epilepsy community desperately needs,” said Leah Deason, Ozzie’s Mom. “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 the light of our children forever shine.



February 28, 2023


Christopher Advocacy Blog

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 November Christopher was first elected and the first person with Down Syndrome to be an elected member of Donegal Youth Council! We are so proud!
All my life, my family has taught me the importance of advocacy. When I was born with Down Syndrome, my mom became involved in the Down Syndrome community here in Donegal. Mom is a board member at Donegal ETB, and I have learned a lot by joining her at work. We have talked about what causes Down Syndrome (being born with an extra chromosome), and how we can send out good messages and positive thinking.

My brother Francis is two years younger than me, and he is my best friend. I advocate for him too because he was born with Jordan’s Syndrome. Jordan’s Syndrome isn’t the only thing that makes him unique! Francis and I share a room, we do a good job of helping keep each other calm, and love to share marshmallows. We also love spending time in the ocean! One of the best things about Francis is that when I get home from school, he is always waiting to give me a big hug. We are going to be best friends forever, advocating together.

Last year I was so happy and proud to be elected to Donegal Youth Council! I’ve made so many new friends on the board. We meet every Tuesday, and we talk about problems we see like mental health, body image, social media, and alcohol. Sometimes we take what we have talked about and advice the school and community. I also help with the teams. There are about twelve of us, and we have social activities like football. It’s a great way to see friends, and I’m looking forward to our February group where we will head to Dublin to sing, go bowling, and try out escape rooms.

If you want to know more about Donegal Youth Council, visit out Facebook page! https://www.facebook.com/donegalyouthcouncil


February 23, 2023


carole and yara

Advocating 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 medical intervention that you had to push for? Remember when your non verbal child was pushed around at the playground by another child and you had to be their voice? Remember the discussions and meetings with their school so they get the support they need? Remember that long phone call with insurance to get them to approve a claim? Every time you have spoken on behalf of your child, argued for their cause, and supported their needs, you were being an advocate, and a pretty good one too!
As parents with children with rare diseases, we are often presented with situations as if we have no control over the present or the future. From the moment of diagnosis we are told “just go home and love your child”. The truth that many hide from us, either purposely or by habit, is the fact that there is so much we can control, so much we can change, so much we can access. We need to feel empowered and we need to continue to speak up. It’s a big responsibility but a choice you can make to not just accept the status quo and to drive towards what you need for yourself, for your children, and for your community. It’ll soon stop being about your child and your family and it will become a driving force for positive change that will reach generations to come. 
I advocate by telling our story. I advocate by making it personal for decision makers. I advocate by being part of the change I want to see. I advocate by believing that communities will do better if given the opportunity. You will be surprised by how far this one phone call will take you, by how impactful others getting to know your child is, by how powerful your efforts can be… Feel empowered, take a step, and watch the magic happen. 

Carole Bakhos is the Executive Director of Jordan's Guardian Angels.



February 16, 2023



JGA 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 world.  Our Ambassadors play a vital role in supporting regional communities and in ensuring the JGA mission expands globally.

Currently, 12 parents of individuals with Jordan’s Syndrome in the USA, Argentina, New Zealand, Germany, Italy, France, Britain, The Netherlands, and Israel have participated in training and are serving our families by:

  • Attending quarterly meetings with the JGA team to stay up to date on the research and any active projects.
  • Welcoming new families in their area by scheduling a one-on-one meeting.
  • Bringing together local communities by utilizing dedicated channels such as Slack.
  • Creating a directory with contact information for local families.
  • Expanding the foundation’s reach and connecting with additional families by reaching out to local organizations and groups.
  • Supporting translation of main documents created by JGA.

Thank you to our Ambassadors for all you do to support the Jordan’s Guardian Angels patient community!

Do you want to connect with an Ambassador? Email connect@jordansguardianangels.org.

Would you like to learn more about becoming an Ambassador? Email Executive Director Carole Bakhos at cbakhos@jordansguardianangels.org.


February 1, 2023


Connect With Us

Contact Info

1121 L St, Suite 100, Sacramento, CA 95814

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.