(1225)-min

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
USI
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:
EXTREME DUCK HUNTING – Larry & Sally Fogg
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!

Published

December 1, 2021

Share

FullSizeRender-3-min___

Welcoming our New JGA Families

ATTENTION **NEW** JORDAN’S SYNDROME AND JORDAN’S GUARDIAN ANGELS FAMILIES! THIS POST IS FOR YOU!

Hello to all of you, our newly diagnosed families. We are so happy you are here, that you have found us, and that you can now join our efforts to find a treatment or a cure for Jordan’s Syndrome. Together we truly can change the world.

Let’s start by saying that you may be feeling overwhelmed, anxious, even a bit sad or confused right now and that’s ok. Know that this post is here for you. If you want to wait to read it, that’s ok…. It will be here when you’re ready and so will we.

That said, if you’ve continued reading, great! Please know that you are not alone anymore. There are more than 200 families in 35 countries around the world that are here to support you, trade stories and experiences with, ask questions to and gain hope and understanding from. We are here for you. The Jordan’s Guardian Angels team is here for you, and our team of brilliant researchers are here for all of us as they work diligently and tirelessly for a treatment or a cure for Jordan’s Syndrome. We are closer than ever to that goal.

We recently published a podcast on 11/29/21 that goes through every aspect of being a newly diagnosed Jordan’s Syndrome family.

Some of the topics include:

-What is Jordan’s Guardian Angels?
-How to take advantage of our online community
-How to join our informal database
-Background on the research
-What is Simons Search Light? And how to you provide EEGs and MRIs to Seattle Children’s?
-How do you help spread awareness?
-How can I get involved and support the effort?
-What is the medical kit and what do I do with it?
-What social media does JGA utilize?
-Where can I listen to the podcast?
-What resources are available and how can I easily find them?
-Where do I go when I have more questions?

PLEASE, take a moment and listen or watch. We know that it will be worthwhile.

Here’s how to connect:https://jordansguardianangels.org/a-rare-reality/

We are a small part of your family now and you are a big part of ours. If you have any questions or concerns, please feel free to email us at info@jordansguardianangels.org, find us and connect on Facebook, and let’s travel this road together.

Published

November 30, 2021

Share

dna-g18df50ef5_1280

Columbia University Selected as Rare Disease Center of Excellence

Big congratulations are in order for Jordan’s Guardian Angels Principal Investigator Dr. Wendy Chung, and Columbia University Irving Medical Center with New York Presbyterian. The group has been named a Center of Excellence by the National Organization for Rare Disorders (NORD).

Dr. Chung not only leads our research team but also leads the new Center of Excellence, and as a physician-scientist and clinical geneticist she has identified more than 50 rare genetic conditions.

wendy

“This is an important time in medicine, when we have the ability to identify more patients with rare diseases, identify what causes the disease, and use precision medicine to find ways to treat them,” Dr. Chung said.

Congratulations to you Dr. Chung and to your organization. We couldn’t be more proud of the work you and our research team do every day working for a treatment or a cure for Jordan’s Syndrome.

To read more about this latest accolade for Dr. Chung, click here.

Published

November 23, 2021

Share

Picture3-min

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.

Picture1-min

“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!

Picture2-min
Picture5-min
Picture6-min
Picture3-min
Picture4-min

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!

Published

November 22, 2021

Share

Picture1

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.

Picture1

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.

Picture2

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.

Picture3

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.

Picture4

Published

October 21, 2021

Share

IMG_5696

JGA Dad Goes the Extra Mile to Raise Global Awareness, Funds for Research

Oh Poppy! To know her is to love her. Her smile just lights up the room.

Poppy Hill was diagnosed with Jordan’s Syndrome at 6 years old. Like many of the other children who have the gene mutation, Poppy has global developmental delays, hypertonia, as well as sensory, sleep, and behaviorial issues.

IMG_5696

It took countless tests, assessments, and therapies to finally get their answer as to why there was something happening to their child.

“Poppy has a gene mutation,” her Mother Michaela wrote on her blog, “at conception what should have been a circle came out as a square but on a microscopic scale. One small, fluke change in her DNA.”

But none of this keeps Poppy from flashing that bright smile and making someone’s day. Her Mom says empathy is her daughter’s super power.

The Hill family has been a big supporter of Jordan’s Guardian Angels and the groundbreaking research being done to find a treatment or a cure for Jordan’s Syndrome, but it was Rob who took that support a step further.

Poppy’s Dad decided at the end of 2020 that he would raise money for the research by walking, running, cycling, and swimming 2,715 miles. That’s the distance from the Jacksonville, Florida area where they live, to Sacramento, California where JGA is headquartered. Rob gave himself 121 days to complete the task and took off, completing 2,718 miles two weeks ahead of schedule.

His fundraising was so successful in fact he’s now taking the effort to a global level, challenging other families who have children with Jordan’s Syndrome to hit the road with him again in the coming months. Stay tuned for more on how to get involved!

Thank you to the Hill Family for all your support and for sharing your story!

Published

June 29, 2021

Share

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.