November 2021

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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

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Family Resources / Uncategorized - 11/30/2021
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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.

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“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

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Research - 11/23/2021
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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.

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“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!

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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

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Our Global Community - 11/22/2021

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info@jordansguardianangels.org

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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.