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



Top 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 meet you where you are.
For our new families there is incredible support in place. From one-on-one meetings with our Executive Director Carole Bakhos to connecting you to the Ambassador in your region, there are so many resources available.
Your JGA Team strives for excellence everyday especially when it comes to supporting our community. We are all available to answer your questions, create and provide ANY resources you may need, assist with interfacing with doctors and schools and more. If there is ANYTHING you need, we are here and can make it happen.
We mentioned our Ambassadors above, but this specially trained group of people is just incredible. Our Ambassadors are global in reach and are here to support you and navigate your experience with you in your language. They have created Whatsapp groups and Facebook groups per community and are here to help.
Project Halo is our sibling support group. Led by our sibling extraordinaire Lexi Levine, this group meets virtually to allow siblings to share stories and ask for support. It’s a pretty magical group to watch and be around so if you have a sibling of a child with Jordan’s Syndrome who wants to be involved please let us know!
There are also Moms and Dads Groups in place to help. If you are not included yet in those groups reach out and we will add you!
We strive to support you in person too. Every other year we hope to meet in person to connect and to gather valuable research data. It’s an incredible experience for our entire community.  And, when we can’t meet in person, we will meet virtually so we don’t go too long without connecting.
Our fundraising is a huge part of those in person reunions. So please join us in helping us to raise funds to support Jordan’s Syndrome research and more.
At JGA we also believe that mental health support is imperative. From our Talk to Me chat sessions to our wellness series, we are constantly looking for ways to support you. Stay tuned for more on this!
Our website is truly an incredible place to get what you need. From our resource center to telling our story, there is everything you need in one spot, and if it’s not there and you need it, we will create it, just ask!
We have so many ways to connect to you, using our social media (Facebook, Instagram, Twitter, YouTube, LinkedIn, TikTok and more) we can always connect with you! We also send out a JGA Connection video and stakeholder email quarterly to bring you up to speed.
Please take a moment and listen to our podcast! There are dozens of episodes to help inform, inspire and support you!
Also, CHECK YOUR EMAIL! Every Friday an email goes out to our families that’s everything you need to know from that week. Need to sign up? Just go to our website for more.
Bottom line: if you need something JGA is here for you! No question or request is too big or too small. Please don’t hesitate to reach out to any of us, we are here to support YOU!


May 23, 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



Rare Revolution Magazine Impact Report: The Impacts of Rare Disease on Sibling Experience

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 Sibling Impact Report.

Inside, the group  takes a closer look at their findings from 52 siblings ages 8-25 from families affected by rare disease. It’s more than 30 pages, but it’s a wonderful resource for so many of our families and families across the rare disease space. Thank you, Rare Revolutions Magazine!
Read more below:


April 5, 2023


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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 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.

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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



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!

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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


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.