Family Resources Archives – Jordan's Guardian Angels

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!

Partnerships

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!

Facebook
Instagram
YouTube
Linkedin
Twitter
TikTok

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!

Family Resources / Our Global Community / Research Update - 07/13/2023

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!

Family Resources - 05/23/2023

JGA Ambassadors Program

Jordan’s Guardian Angels is proud to highlight our Ambassadors program!

Created in 2022, JGA Ambassadors act as the point of contact for the foundation and our families in specific regions around the world. Our Ambassadors play a vital role in supporting regional communities and in ensuring the JGA mission expands globally.

Currently, 12 parents of individuals with Jordan’s Syndrome in the USA, Argentina, New Zealand, Germany, Italy, France, Britain, The Netherlands, and Israel have participated in training and are serving our families by:

Attending quarterly meetings with the JGA team to stay up to date on the research and any active projects.
Welcoming new families in their area by scheduling a one-on-one meeting.
Bringing together local communities by utilizing dedicated channels such as Slack.
Creating a directory with contact information for local families.
Expanding the foundation’s reach and connecting with additional families by reaching out to local organizations and groups.
Supporting translation of main documents created by JGA.

Thank you to our Ambassadors for all you do to support the Jordan’s Guardian Angels patient community!

Do you want to connect with an Ambassador? Email connect@jordansguardianangels.org.

Would you like to learn more about becoming an Ambassador? Email Executive Director Carole Bakhos at cbakhos@jordansguardianangels.org.

Family Resources / Our Global Community - 02/01/2023

Click Here for Every Way to Connect with JGA!

Thanks for taking a moment to visit this quick and easy resource to get connected! Below you will find a list of resources to get you connected to JGA. Take a peek!

Newsletter: Our weekly newsletter goes out every Friday at 11am EST. It’s a one stop shop for everything you need to know from JGA for that week. If you do nothing else with JGA on a regular basis, please do this, take a moment and read this newsletter. Sign up here by adding your information at the Stay in Touch section on our homepage: https://jordansguardianangels.org

Slack: As our community continues to grow, we went looking at a more robust communication platform with better features and data privacy. We created a Slack workspace “Jordan’s Syndrome Community”. Through Slack we can have private channels for various support groups, topical channels, region and language specific channels, variant specific channels and updates from the JGA Team and Research Team.
Our Facebook page isn’t going anywhere, we just hope that Slack will be an easy way for our chat groups to be in one place. Give it a look and click here to join us today!

Resource Center: If you haven’t taken a moment to visit the resource center on our website please do so. It’s a one stop shop for everything you will need on your journey with Jordan’s Syndrome. Click here for more.

Ambassadors: As our community grows, we asked our families to step up and help our global reach. The Ambassador Program was launched has representatives in numerous regions around the world. The Ambassadors are key to enable access to our communities across the globe, to support new families in their on boarding as they find us and to push us as a foundation to truly grow our mission globally. We would love to expand the program further, so please reach out if you are interested in becoming an Ambassador. Email connect@jordansguardianangels.org for more information.

Special Projects: Many of our families have been looking for ways to get more involved with our efforts. The Special Projects committee is a way to help move JGA’s mission forward to better support individuals with Jordan’s Syndrome. The committee has really pushed the needle by acting as advisors who help identify gaps and brainstorm solutions. Email connect@jordansguardianangels.org for more information on getting involved.

Family Database: We want to make sure we are keeping track of our families as we head into clinical trials. Please join our confidential internal database. Click here to join now!

Research: As we launch clinical trials we need as much data as possible for our research team to consider. Please take a moment and join the research today. Questions? Email coordinator@simonssearchlight.org or go to their website: www.simonssearchlight.org.

HALO Project: Our sibling population is also top of mind here at JGA. We are constantly looking at new and innovative ways to support our siblings. To that end, we have tapped Lexi Levine, a JGA Sibling, to head up our Halo Project, a support system for our siblings. Lexi has received specialty training from Sib Shops to better serve our community. Her classes received rave reviews at our Family Conference, and we look forward to having many more opportunities for our siblings to come together in 2023. Email siblings@jordansguardianangels.org for more ways to get connected to this effort.

A Rare Reality Podcast: ‘A Rare Reality’ is now one of the Disorder Channel’s Top Podcasts to listen to! Take a moment and listen today!

Social Links: Join us today on social media: Facebook, Instagram, Twitter, LinkedIn, YouTube and more! We want you to join us!

Family Resources - 01/19/2023

2022 Jordan's Guardian Angels Recap

Happy New Year! We are so honored that each and every one of you are by our side as we continue our journey toward a treatment or a cure for Jordan’s Syndrome. What a year it has been. Our community has grown on a weekly basis as we added new families from around the world, our research team made incredible strides and breakthroughs and has some new and exciting updates to share, our JGA Team is expanding and evolving to meet your needs as this global community grows, and so many of you are stepping up to help move this effort forward.

There is so much to look forward to in 2023 with new ways for all of you to get involved on a larger scale at JGA. We hope that you are all as excited as we are. For now though, let’s take a look back at all that we have accomplished in 2022.

Research

JGA’S brilliant team of researchers is unrelenting in their efforts to find a treatment or a cure for Jordan’s Syndrome. All of that hard work is truly paying off, and our team has had incredible breakthroughs in the last 6 months.

Our JGA research team met in Palm Springs on December 11th for a full day workshop of sharing, brainstorming, and planning research next steps. We are so excited to share that we are closer than ever to finding a treatment that can help our children.

Mice clinical trials are showing tremendous promise. After screening many FDA approved drugs or drugs currently in clinical trials, our team has identified a winning lead! Mice with Jordan’s Syndrome showed improvement in spatial awareness, memory and cognition after being treated!! While we have a lot more work to do, we can’t help but be excited with the findings and its significance for our community.

Our team will be ramping up mice clinical trials in 2023, collecting additional data, and possibly positioning us to start human clinical trials in 2024. We will keep you all updated as more data become available.

Click here to hear from our lead researcher Dr. Wendy Chung about the latest findings.

As always, we thank our researchers for all of their diligence, commitment, care and concern for our children. Without them, nothing would be possible.

Community

Our global community grows every week. We now have approximately 341 people in 36 countries diagnosed with Jordan’s Syndrome and we know that thousands more are out there. We are proud that together we are spreading the word about Jordan’s Syndrome worldwide and helping to make medical providers aware of Jordan’s Syndrome and JGA.

Conference

The true highlight of the year for our JGA Team was our family conference held in July in New York City. It was a dream come true to have 65 of our families together under one roof to learn, laugh, hug, dance, and exchange ideas.

The event was not only a family reunion but also necessary to move our research forward. 70 blood samples were collected, 50 clinical data points were gathered and 30 EEG’s were taken. A huge success!!

Click here to watch our Family Conference 2022 Recap Video

We are looking forward to another JGA Family Conference in 2024. Details to come soon regarding dates and location!

Partnerships

Your JGA Team worked hard in 2022 to tell the world about Jordan’s Syndrome and Jordan’s Guardian Angels and expand our reach in the rare disease space. We are proud to announce we have now partnered with multiple important rare disease groups to help get the word out and work together to change the lives of children and adults with rare disease.

To date, our partnerships include The Rare Epilepsy Network (REN), The EveryLife Foundation, Rare Disease Legislative Advocates (RDLA), Global Genes, Rare Revolution Magazine, Patient Worthy, National Organization of Rare Diseases (NORD), Extra Lucky Moms, Rare., Federation of American Societies for Experimental Biology, and more.

Jordan's Guardian Angels is proud to announce we have joined The Epilepsy Foundation, The Rare Epilepsy Network, and a coalition of other organizations in support of Seizure Safe Schools legislation.

We are also expanding our role in the world of advocacy taking part in the Rare Disease Legislative Advocates Rare Disease Week on Capitol Hill. Members of the JGA team networked with other rare disease patients and advocates, discussed important legislation with lawmakers, and learned so much from others on the front lines bringing change to patients’ lives.

Advocacy is top of mind for our team but also for our families. Many of our families stepped up at our Family Conference and asked how they can help to advocate for legislation that benefits the rare disease community.

Now, we are thrilled to share that Jordan’s Guardian Angels was invited by the Everylife Foundation to join their Community Congress. It is our hope that we can elevate ourselves in the advocacy space.

Community congress is dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together in a strategic advisor council. The council provides advice and insight on urgent policy issues, programs and initiatives. We will keep you posted as to how you can help as we learn more.

Jordan’s Guardian Angels is also quickly becoming a model for other foundations beginning their rare disease journey. We have met with several groups including our 3CA contingent to help support them as they begin their journey, and we have met with others who recently received a rare disease diagnosis and are hoping to have the success that Jordan’s Guardian Angels is having in finding a treatment or a cure. We are paying it forward and hoping that in supporting these groups and many others, they will do the same.

There are 7,000 rare diseases known worldwide and 25-30 million people live with one. That’s 1 in 10 Americans living with rare disease right now. Joining forces with these far-reaching groups will truly help to move our cause forward and bring Jordan’s Syndrome and Jordan’s Guardian Angels to the forefront in the rare disease space.

Shine Like Ozzie

We hold space in our hearts every day for sweet Ozzie Deason and all of the children in our community who have passed away due to Jordan’s Syndrome. We want their lights to shine forever.

We are thrilled to share that the Shine Like Ozzie Scholarship will return once again this year. Our $1,000 Shine Like Ozzie Scholarship will once again open on Ozzie’s Birthday, December 31st. The scholarship is open to undergraduate and graduate students studying anything related to Epilepsy.

Please help us to spread the word. Submissions will be accepted through January 31,2023 and a winner will be announced on rare disease day February 28, 2023.

Podcast/Blog/Website

35 episodes strong, our podcast, ‘A Rare Reality’ is on the rise. It is now regarded as one of Patient Worthy’s top rare disease podcasts to listen to, and we are gaining followers on a regular basis. If you haven’t checked it out, please take a moment to do so. Our conversations are both JGA and Jordan’s Syndrome specific and rare disease broad, covering topics that truly hit home for so many. The podcasts are available on all major platforms, or if you prefer, the entire conversation with video is on our website. Click here to listen!

Our website also got a facelift this year, streamlining it to simplify your user experience. If you haven’t yet taken a moment to look at the resource center, please do so. There you will find all of the important documents you need on your journey with Jordan’s Syndrome. And while you’re there, take a moment to read our blog! There is an incredible amount of detailed information there including recaps of our major fundraisers, our family conference and much more. Click here for the resource center and here for the blog.

Family Involvement

We want to take a moment to thank all of our families and supporters who have taken the time and effort to fundraise for and/or get involved in special roles at JGA, or both! Your work for our children is truly driving this research and for that we are extremely grateful.

As our community grows, we asked our families to step up and help our global reach. The Ambassador Program was launched this summer and already has representatives in numerous regions around the world. The Ambassadors are key to enable access to our communities across the globe, to support new families in their on boarding as they find us and to push us as a foundation to truly grow our mission globally. We would love to expand the program further, so please reach out if you are interested in becoming an Ambassador.

Many of our families have been looking for ways to get more involved with our efforts. The Special Projects committee is a way to help move JGA’s mission forward to better support individuals with Jordan’s Syndrome. The committee has really pushed the needle by acting as advisors who help identify gaps and brainstorm solutions. We thank everyone that actively contributed to this initiative and we look forward to another year of growth ahead.

Our sibling population is also top of mind here at JGA. We are constantly looking at new and innovative ways to support our siblings. To that end, we have tapped Lexi Levine, a JGA Sibling, to head up our Halo Project, a support system for our siblings. Lexi has received specialty training from Sib Shops to better serve our community. Her classes received rave reviews at our Family Conference, and we look forward to having many more opportunities for our siblings to come together in 2023.

There are big and exciting changes coming on the fundraising and involvement end of things at JGA in 2023. Stay tuned for more on who will be joining our team and helping to move these efforts forward and get each of you involved. We can’t wait to see what this global group can do to help find a treatment or a cure for our kids.

Recognition

Jordan’s Guardian Angels is quickly gaining recognition including top honors from Global Genes, a leading rare disease patient advocacy organization. The group 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, our very own co-founders of Jordan’s Guardian Angels.

This 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. We are so proud their incredible work is being recognized on a global stage.

JGA also was featured as part of a segment on The Today Show recently and was awarded $5,000 for all of the incredible work being done to find a treatment or a cure for Jordan’s Syndrome. We can’t thank NBC Universal enough for sharing our story and look forward to sharing more in the future.

Look Ahead (High-Level Goals, Themes, Research)

2023 is shaping up to be a massive year for Jordan’s Guardian Angels. There are incredible strides being made on the research front, our JGA Team is expanding and we are evolving to meet your needs.

As with every year, our team came together to look ahead and decide on our high-level goals for the year ahead which for 2023 focus on Access, Advocate, Communicate, Educate, Fundraise, Research and Support.

Access: Creating opportunities for connection between the patient community, the medical advisory board and the foundation.

Advocate: Pushing forward the greater rare disease agenda through legislation, partnerships and empowering the patient community to work for the greater good.

Communicate: Engage and deliver information to our global community, our families, our stakeholders, the medical community, and the world.

Educate: Informing the medical, the patient communities, and the public about all things Jordan’s Syndrome. (Symptoms, ways to diagnose, therapies, care before the cure, and research efforts.)

Fundraise: Grow current opportunities while looking at new and innovative ways to engage our families and new donors to raise funds in support of JGA’s mission.

Research: Continue to drive efforts in partnership with our research team to find a treatment and or a cure for Jordan’s Syndrome.

Support: Bring comfort and assistance to our families and sibling groups by bringing them together and providing an emotional support system and financial assistance when necessary.

Each of these goals has numerous subgoals to make sure that no stone is unturned for this community. We are truly here for you, supporting you every step of the way.

We have also implemented monthly themes as you can see below. Our hope is that by providing themes for each month we can bring you topical, important, informative, and helpful information to better support our ever-changing community. There are so many ways for you to get involved and we look forward to sharing those ways with you in January during our ‘Get Connected with JGA’ month.

Thank You

Jordan’s Guardian Angels is now a recognized global name. We are growing, evolving, and leaving a mark on the rare disease space and we will continue to do so. This team - your JGA Team and our Research Team - are dedicated to changing the world. With your help the sky is the limit. We thank you for all that you have done in 2022, and we can’t wait for 2023.

With gratitude, Your JGA Team

Family Resources / Research Update - 01/13/2023

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.

Family Resources / Uncategorized - 11/30/2021

Published

Top Ways JGA Supports You

Published

JGA Ambassadors Program

Published

Click Here for Every Way to Connect with JGA!

Published

2022 Jordan's Guardian Angels Recap

Research

Community

Conference

Partnerships

Shine Like Ozzie

Podcast/Blog/Website

Family Involvement

Recognition

Look Ahead (High-Level Goals, Themes, Research)

Thank You

Published

Welcoming our New JGA Families

Published

Recent Posts

Categories

Connect With Us

Contact Info