Jessica Gugele

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Why I’m doing Jeans for Genes

I’ve signed up to Jeans for Genes to raise money for Children’s Medical Research Institute and help save more kids’ lives. 

Can you help by sharing this message with the people you know and asking them to donate too?

Here is our story explaining why this cause is so important to us:

Elijah was a healthy, happy child, until one day out of the blue, he wasn’t quite right, and started having odd arm, leg and trunk movements, and we knew something was very wrong.

Doctors found something wrong on an EEG and we were told it was Hypsarrythmia (Infantile Spasms), a rare and catastrophic form of Epilpesy, everything in our world stopped.

As scary as that was for us to hear, it got worse as Elijah’s case was quite unique, and it took multiple tests to determine that he had DLG4 Related Synaptopathy & MELAS Syndrome. 

We were lucky to get the right diagnosis, but it could have gone very differently if that work had not been done.

Medical research is so important to get any answers for any genetic condition. 
For Elijah, the research done prior to his Epileptic onset is what helped save our son, the wrong medication for him can be deadly. 
Research needs to continue so the next child diagnosed with a rare disease can be helped.

I care about the 1 in 20 Aussie kids who face a birth defect or genetic disease, like DLG4 & MELAS. 
Most people don’t know that this is caused by changes in genes and DLG4 (or any genetic change) can happen to anyone. 
So, the research you and I support today may one day help someone we know or someone in our family.

There’s lots of work to do, but there is also lots of hope.

Join me. Share this message. Donate. Thank You!

Latest updates

09 Aug 2024 by Jessica Gugele

Thank you

We're thrilled to celebrate the success of Jeans for Genes day, and we're grateful for the support of our donors. Thanks to your generosity, we've raised $371 for the Children's Medical Research Institute (CMRI). This funding will enable the CMRI to continue it's groundbreaking research, bringing us closer to finding cures and treatments for children like Elijah. Let's keep the momentum going and continue to support this vital cause. Special shoutout to my kids for modeling Jeans for Genes merch with pride. You can purchase merchandise all year round from the Jeans for Genes website, with all proceeds going towards funding the CMRI's research and awareness programs. United we stand, and together, we can make a real difference in the lives of children 💙

My Impact

So far this year I helped provide...

9

Hours of research

For every $50 raised, one hour of research is funded

Funds raised over the years

Biggest Donor

Jean-ius Donor

$110

Thank you so much to my biggest supporter, Lemeki Valako, for donating an incredible $110 to help fund vital research into curing children’s genetic diseases.

Thank you to our Sponsors

$53

Shelley Duggan

4 weeks ago

$26

Kirra

Love Elijah and the Gugele family

1 month ago

$32

Matched Gift

Your donation has been doubled by our sponsors!

1 month ago

$32

Badges Sold

1 month ago

$21

Matched Gift

Your donation has been doubled by our sponsors!

1 month ago

$21

Ashleigh Seymour

All the best for the fundraising. Elijah is such a gorgeous boy and I hope this may help find some information that helps all of you.

1 month ago

$53

Rosie Mathers

1 month ago

$26

Christine Sullivan

1 month ago

$110

Lemeki Valako

1 month ago

$56

Opa

1 month ago

$21

Jessica Gugele

1 month ago