Inspiring 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 Support JGA event in November.

And that’s not all: SO MANY OF YOU helped to make this event a success by selling tickets raising $30K!


Scroll down to see pictures from this fabulous event.

There are so many ways to fundraise for Jordan’s Guardian Angels and our research efforts into Jordan’s Syndrome and our mission. Stay tuned for more new and exciting opportunities.


January 19, 2023



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.


September 14, 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.


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



Racing for a Treatment or a Cure for Jordan’s Syndrome: Our Most Successful Fundraiser to Date!

It was a star-studded October evening in Houston, where families from around the world came together in a record-setting fundraiser to support our groundbreaking research.

Candice and Tim Huber, whose son six-year-old son Hutton has Jordan's Syndrome, hosted their annual fundraiser benefitting Jordan’s Guardian Angels. As in years past, the generosity of those attending was nothing short of incredible. This year’s event raised over $440,000 for a treatment or a cure for Jordan’s Syndrome, our most successful fundraiser to date!This year, those in attendance wore their Kentucky Derby finest and were treated to an incredible motivational speaker, a live and silent auction, great food, dancing and more.We cannot say thank you enough to Candice and Tim Huber whose tireless efforts are simply unmatched. Your generosity, enthusiasm and love for our children and our cause know no bounds. THANK YOU from the bottom of our hearts!

We also would like to recognize our partners who went above and beyond to make the event a huge success for our children.

Table Sponsors:
Larry and Sally Fogg
Fire Safe
The Anderson Family
The Breeze Family
The Caldwell Family
The Fineberg Family
The Gill Family
The Hardy Family
The Hess Family
The Noreaga Family
The Purdy Family
The Torres Family
The Sims Family
The Young Family

Live Auction Donors:
GEAUX SAINTS GEAUX – Jeremy and Katie Morgan along with Southwest Airlines
SEA GLASS – Painted By Rylie Caldwell, www.ryliecaldwell.com; IG: @ryliecaldwellart
NEW BEGINNINGS – Painted By Amy Fogg Reedy, www.amyfoggart.com; FB: Amy Fogg Art; IG: @amyfoggart
WINGED SOUL – Painted By Leslie Tammariello, leslietammariello.com; FB: leslie.tammariello

It goes without saying, but from the bottom of our hearts, we at Jordan’s Guardian Angels are incredibly thankful for the generosity and support. You truly are life-changers!

Check out our full image gallery below!


December 1, 2021



Our Global Community: Going the Distance for Jordan's Syndrome

One of the greatest things about being a part of Jordan’s Guardian Angels is watching families step up and take on hard tasks to benefit not only their child, but children around the world. Luke Larsson is no exception. He and his wife Sandy are Mom and Dad to Marley, a beautiful 10-year-old who has Jordan’s Syndrome.

We sat down with Luke to talk about how he went the distance for Jordan’s Syndrome research and the incredible sights he saw along that way.

“Marley inspires me to take on difficult challenges every day,” says Luke. “Like her, if I don’t reach my goal the first, second, or third time I keep trying.”

The Larsson family knows that it’s important to help raise money for JGA research to give Marley and others just like her a chance at a better life. So, when Luke had the opportunity to sign up for a 100-mile mountain race he jumped at the chance. He thought it would be an exciting adventure but also a way to raise money for an amazing cause.


“Marley faces challenges every day too … too difficult for me to even imagine. Some days are better than others, but she keeps pushing forward.”

So, he set off! And he took the scenic route!


Luke says it was an incredible experience and he gained knowledge along the way for his next attempt. He raised $550 for Jordan’s Guardian Angels research into Jordan’s Syndrome and for this we are TRULY grateful.

Great job Luke and thank you to the Larsson family for all of your efforts and for being incredible supporters of Jordan’s Guardian Angels!


November 22, 2021



Empowering our JGA Community: the Importance of Self-Advocacy

As our Jordan’s Guardian Angels and Jordan’s Syndrome community continues to grow, one of the conversations we often have is about self-advocacy: how to teach our kids to advocate for themselves and feel empowered to talk about their Jordan’s Syndrome diagnosis, but also their needs, wants, and desires. Research shows that when our children are bringing more to the classroom all of the child’s peers benefit from the learning opportunity.

Christina Janes, Director of Outreach and Awareness for Jordan’s Guardian Angels (JGA) recently sat down with Carole Bakhos, Project Director for JGA and we discussed how her daughter, Yara, is learning to self-advocate, how inclusive education is so important and how to get the community to accept differences as well.


Christina: How has your experience with public schools been so far?

Carole: We’ve had positive experiences with public schools so far. The main reason is the fact that we realized early on that we need to be driving that education bus. As a result, my husband and I work on self-educating to have the tools to advocate for what our daughter needs. Our main goals: access to the curriculum and access to friends… sounds simple but a 40-page IEP (Individualized Education Program) is still necessary as most schools are not established with universal design methodologies and classrooms in place. Inclusive education should not be a fight or a privilege but a right. We wouldn’t change our children for the world. Is this world ready for what children with disabilities have to offer?

Christina: Do you think schools (at least in your area in Colorado) are doing enough to create an inclusive school community for children with disabilities?

Carole: Schools are doing a better job integrating children with disabilities, but are they being included? Inclusive education designs different access points to the curriculum for children that need additional help as well as those that need to be challenged. Decades of research shows the benefit of inclusive education for children with disabilities as well as their classmates. I want that for my daughter and my son alike.


Christina: How do you think Yara’s experience will be different then when Mazin
(her Brother) goes to school?

Carole: While Yara’s little brother hasn’t started school as yet, I can tell you from now that his experience will be different from his sister’s. Jordan’s Syndrome has caused Yara to have to work harder for what comes natural to most. She walked around her 3rd birthday and first talked at 5. Before then, she used a walker to get by and sign language and a communication device to communicate. Even today, at 3rd grade, Yara has a 40-page Individualized Education Program (IEP) mostly full of accommodations that enable her to thrive fully in the general education environment.


Christina: How much do you believe inclusive education has benefitted Yara in the long run?

Carole: I often reflect on our experience with Yara and how different she would be today if she was judged from preschool age and had to adhere to all these limitations and boundaries. By learning alongside her peers, Yara is able to read and do math at her grade level today. She comes home and shares about her day, most of her stories involve another student in her classroom… Through inclusive education, Yara was able to shatter all expectations and to amaze her teachers and peers just like she amazes us daily. I know, without a doubt, that none of that would have been possible without this rich educational setting she’s been emerged in.

Christina: I know Yara is a terrific self-advocate, and she recently had a chance to teach her classmates all about herself and her Jordan’s Syndrome diagnosis. Tell me about that!

Carole: Earlier this month, our family shared with Yara’s classmates regarding Jordan’s Syndrome. Yara wanted to be open about her diagnosis in an effort to normalize disabilities and look past the differences. The classroom read the book written by Jordan’s Guardian Angels “Let’s be Friends” about a little girl, Sarah, also living with Jordan’s Syndrome and prepared questions for us. Yara is leading her way along her peers to embrace their identities and celebrate the richness of diversity.



October 21, 2021


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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.