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
