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


2 0 2 3 Community Meeting Image

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 introductions of our JGA Team with updates on our high-level goals for the year, a message from our Co-Founder Joe Lang and research updates from Dr. Wendy Chung.
We also debuted our brand new JGA video! It’s now available in English, French, Spanish, German, Italian and Arabic on our YouTube channel

Here is the English version to get you started: https://www.youtube.com/watch?v=4BgBOYa2Suo.

2 0 2 3 Community Meeting Image

Some takeaways and action items for our community:
-Please sign up with Simons Searchlight. This is imperative as we move to clinical trials. This information will help move the research forward and the numbers help with the negotiations with pharmaceutical companies. Now is the time, please don’t delay. (If you have any questions, there are step by step instructions on our private family Facebook page.)
-Dr. Chung and the Columbia team went over the medical history data from Simons Searchlight and the data collected at the JGA 2022 Family Conference in New York. Collected data from the children who were in attendance match the reported data in Simons Searchlight which indicates the tests utilized were good measures to use going forward.
Thank you to all of you who could be there and for those who were not able to be, don’t worry, here is a link so you can get caught up! We are all looking forward to seeing you again soon.
Click here for the recording of the conference in case you missed it: https://www.youtube.com/watch?v=z-WScYIewKQ.


March 23, 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



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.


June 9, 2022


Nancy - JGA-54

"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)
-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!


June 2, 2022



A Rare Disease Day Spotlight: The Kelley Family

Living in our rare disease world has brought us so many emotions and feelings. Some stages last longer than others. From the beginning to current, you can see how these feelings have changed for us on our journey with Jordan’s Syndrome.


Fear- my child is missing milestones. We’re afraid something might not be right.

Blame- are we, as parents, doing something wrong? Did I miss a prenatal vitamin during pregnancy? Are we not getting her enough nutrition? It must be because I can’t breastfeed her. She won’t suck properly, I must not know what I’m doing.

Desperate- prior to diagnosis we were so desperate for answers. We spent so much time searching for answers.

Discouragement- we are deep into seeing specialists. No one is able to help us. No one can get us answers. We don’t think we will ever have answers.

Isolation- we are out on this island alone. No one understands us, our needs, our challenges.

Excluded - we don’t feel part of the parenthood tribe. We aren’t invited to social experiences because others are aware of the differences which are becoming more obvious. No one wants to share their own child’s milestones, they think our feelings will be hurt.

Scared- we got the phone call from genetics. There is a mutation that is thought to be pathogenic. We are the 40th in the world. This is scary.

Angry- how could this have happened to us? We love each other. We wanted a child. We went to all of our OB check ups. Everything was fine.

Validated- we knew we couldn’t ever stop searching for an answer, even though it was normal for people to tell us “she’ll get there.”

Welcomed- we connected with our global family after diagnosis. Wow, it’s great to talk with others who seem to understand exactly everything we just said.

Novice- there is so much to learn. We know nothing about this. We have a million questions.

Hopeful- there is a research team!!

Appreciation- for all the simple tasks we take for granted, like walking and talking. Appreciation for health care workers, researchers, teachers and therapists.

Expert- soon we are educating others.

Mentors- soon we feel comfortable supporting and encouraging new members of the group.

Thankful- to be part of this great group of human beings and making new friendships.

Proud- to contribute to the research. To share our story and advocate. To watch our rare princess thrive.


February 15, 2022



A Rare Disease Day Spotlight: The Effinger Family

My husband Kyle and I have two beautiful children, our 3 year old son Liam and our 16 month old daughter Natalie. Natalie has the PPP2R1A gene mutation. After excitedly discovering we were expecting our second child, our 20 week scan led to fear and falling to the floor with the unexpected news that there were abnormal findings in our daughter’s brain.

The doctor found that the ventricles in her brain measured larger than they should and we quickly became high risk. We were offered termination of the pregnancy at 24 weeks as they shared they didn’t know how severely disabled our child might be. We weren’t going to give up on her. 

After her birth, we were relieved and anxious to start exploring what may be going on. As she began to fall behind in her development, and an MRI showed several other anomalies in her brain, her pediatrician and neurologist recommended early intervention services and she began physical therapy twice per week, which grew into speech twice a week as well as occupational therapy. The neurologist offered us genetic testing and after hearing the cost, we were uncertain when we would be able to pursue it.


A friend set up a GoFundMe and connected us with the company Illumina who generously enrolled Natalie in their HOPE program and covered the costs of her genetic testing. After 3 months of waiting, we discovered she had a mutation in her PPP2R1A gene. We felt a relief to finally have an answer and a community to turn to for support. 


February 15, 2022



A Rare Disease Day Spotlight: The Waterman Family

Hello! We are the Waterman Family- Dad: Thomas, Mom: Blaire, Baby: Penny, and baby W expected May 2022, living in Portland Oregon. Penny is our first child, born December 2020. She came shortly after I was diagnosed with COVID and it has been a wild ride ever since!


In April of 2021, when Penny was only 4 months old, she was laying on the couch, next to me, when I noticed what looked like a startle reflex, but then it happened a few times in a row and her eyes rolled up in her head which triggered me to start taking a video. When her dad got home from work, we decided to take her in to see the pediatrician.

Her doctor sent the video to the neurology team at Oregon Health and Science University- who advised us to go to the Emergency Room. Once there, we were admitted and set up for an EEG.

That was when we were diagnosed with Infantile Spasms, something neither we, nor our families, had ever heard of. With this diagnosis, it is important to try and identify a cause- which is often structural (identified in an MRI) or genetic and immediately start treatment. A few weeks later, we were told that Penny had a genetic mutation on her PPP3CA gene.

Our neurologist did not feel hopeful about the prognosis; informing us that, in the small number of patients that have been studied with this mutation, most were nonverbal, non ambulatory, had refractory seizures, and significant developmental delays. She did say that, due to the very limited information found on this rare mutation, it is likely that there is a wider range of outcomes.

This was obviously devastating, life changing, news.

Being the planner I am, I immideiately scoured the internet- reading the limited (2) studies, google searching PPP3CA to learn more about what this gene does (still do not understand it), and searching hashtags on social media. While we were doing all of this work, our amazing support system was doing a lot of research on their own. That was when my older sister found Jordan’s Guardian Angels and saw the PPP mutation and assumed they may be closely related.

Since connecting with Jordans and Carole, I have learned so much about the rare disease community and the advocacy that is necessary to make things happen in the research world.


We have started our own Facebook group and have found about 13 families with this same mutation- from all over the world, we have worked to gather medical info/blood samples for the Simon’s Searchlight Database, reach out to researchers, start a website, create a social media presence, and support each other as much as possible.

Our hope is that we will continue to grow our network, push for research, share experiences with therapies/medications, and push for a CURE for- not only our rare genetic mutation- but for all rare diseases that affect our babies.

As for Penny, she just started her 8th medication, and is on the ketogenic diet, her seizures have improved but have not gone away. We do our best to remain hopeful and optimistic with each new treatment, but the reality is that we likely still have a long road ahead, but are extremely grateful for the community around us and the support we feel every day.


February 8, 2022


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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.