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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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carole and yara

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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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.