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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.
 

Published

March 16, 2023

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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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Published

March 3, 2023

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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!

 

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Published

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.

Ozzie

Published

February 28, 2023

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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

Published

February 23, 2023

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Advocating for Our Children

The concept of advocacy might seem overwhelming to some. In reality, as parents of a child with disability you have been advocating from the moment they were born. Remember the time they needed a medical intervention that you had to push for? Remember when your non verbal child was pushed around at the playground by another child and you had to be their voice? Remember the discussions and meetings with their school so they get the support they need? Remember that long phone call with insurance to get them to approve a claim? Every time you have spoken on behalf of your child, argued for their cause, and supported their needs, you were being an advocate, and a pretty good one too!
 
As parents with children with rare diseases, we are often presented with situations as if we have no control over the present or the future. From the moment of diagnosis we are told “just go home and love your child”. The truth that many hide from us, either purposely or by habit, is the fact that there is so much we can control, so much we can change, so much we can access. We need to feel empowered and we need to continue to speak up. It’s a big responsibility but a choice you can make to not just accept the status quo and to drive towards what you need for yourself, for your children, and for your community. It’ll soon stop being about your child and your family and it will become a driving force for positive change that will reach generations to come. 
 
I advocate by telling our story. I advocate by making it personal for decision makers. I advocate by being part of the change I want to see. I advocate by believing that communities will do better if given the opportunity. You will be surprised by how far this one phone call will take you, by how impactful others getting to know your child is, by how powerful your efforts can be… Feel empowered, take a step, and watch the magic happen. 

Carole Bakhos is the Executive Director of Jordan's Guardian Angels.

 

Published

February 16, 2023

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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.

Published

February 1, 2023

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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!

Published

January 19, 2023

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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!

THANK YOU THANK YOU THANK YOU TO EVERYONE INVOLVED!

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.

Published

January 19, 2023

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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.

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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.

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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!

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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.

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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.

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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.

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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.
 

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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

Published

January 13, 2023

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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.