Team Jovie

25/12/2024

Merry Christmas 🎄♥️

18/12/2024

Jovie had a great last day of school 🎄
She loved her teachers & SLSO’s this year 🌸

13/12/2024

Very proud of Jovie for always trying her best at school 🌸

09/12/2024

I’ve been archiving some photos from the last 20 years and found some of Jovie ♥️ (I also found alot of video! I’ll need to sort through it soon)

06/12/2024

My name is Winnie, an Oxford music graduate and former pianist of the Hong Kong Philharmonic Orchestra. In 2017, my son was diagnosed with Level 2 Autism and ADHD. Inspired by Music Therapy’s transformative impact on my son and myself as a carer, I retrained as a Registered Music Therapist (RMT) a...

30/11/2024

Share if you can 🌸

Meet Natalie, who loves music and possesses amazing memory recall. She radiates confidence whenever she is immersed in music. Natalie has a tendency to run w...

28/11/2024

Music therapy is SO VITAL - if you can, sign the petition to show your support to keep it fully funded by NDIS

https://www.change.org/p/keep-music-therapy-as-an-ndis-funded-therapeutic-support

Thank you to our Sound Expression community who are rallying together to advocate for the NDIS to reverse their decision and reinstate Music Therapy as a funded support, back into the Capacity Building - Improved Daily Living category, at a rate aligned with other Allied Health professionals.

A very big thank you to our team member Winnie Choy, one of our parents Gemma and her son Max who went above and beyond to help us get the message across to NDIS Minister Bill Shorten.

We made it to the front page of the Sydney Morning Herald – our message is loud and clear!

https://www.smh.com.au/national/this-therapy-is-helping-max-walk-its-funding-is-about-to-be-cut-20241126-p5ktis.html

22/11/2024

Our community is devastated to hear of this angel’s passing. It takes enormous courage to be part of any trial, we hope her family is aware of our gratitude and sorrow on an international scale.

😞💜

We are deeply saddened to tell you that the girl in the Neurogene clinical trial who had complications has passed away.

02/11/2024

We love Goldie and her mum ♥️ Thank you for sharing a bit about Jovie x

16/10/2024

Every individual with Rett is unique and so are their symptoms. In most clinically diagnosed individuals, Rett is caused by a pathogenic variant - or mutation - on a gene on the X chromosome called MECP2. This gene is important for brain development and for activating and deactivating other gene functions. When the MECP2 gene does not function properly, it can cause issues throughout the entire body. These can include near-constant repetitive hand movements, seizures, scoliosis, digestive problems, and breathing issues, but the symptoms and their severity will be different for every individual.

Though Rett occurs most often in females – 1 in 10,000 births – boys can have Rett too. Because Rett is not degenerative, individuals with Rett can live to middle age and beyond, but will need lifelong care.

This October during Rett Syndrome Awareness Month, help spread the word about this rare disease by sharing this post or creating your own post, fundraiser, or personal page with our tools at rettsyndrome.org/october. More awareness means more support for families and more funding for the research critical to creating a world without Rett.

08/10/2024

It’s Rett Syndrome awareness month 💜
Jovie’s been unwell these school holidays (and before it) so I haven’t prepared much for this years awareness campaign but one thing came up today that I wanted to share.

We didn’t know about Rett Syndrome before - we didn’t hear about it from a doctor. I heard it from a Rett Syndrome family on tv and also a close friend (but I can’t remember which came first!).

I used to work from home in web development and had the tv on in the background on day, it was January 2011. At this point Jovie was almost 2 and we had known something was not right with her development. I had already brought it up with her GP and they assured me she’d catch up.

Then this segment came on The View on my tv - https://youtu.be/EnKF6dS-tfM?si=xASZrGQbUboJxQe1

This was the missing piece for us - and I think the reason I felt very certain Jovie had Rett Syndrome almost a year before her DNA results came back in June 2012.

The reason why I bring this up is to say - awareness matters. Families that can share their Rett Syndrome story on whatever platform they have, will reach a family out there looking for answers.

By sharing our stories, you are also creating that lifeline to someone who is looking for an answer. You’re putting the name ‘Rett Syndrome’ into someone’s vocabulary.

Jovie’s Rett syndrome diagnosis was now 12 years ago (woah!). We still meet doctors that don’t know what Rett Syndrome is - how are they supposed to learn about it if we don’t put it out there? Rett Syndrome is still a rare genetic disorder - but we can at least do our best to let the world know we exist.

How many of your heard of Rett Syndrome before you knew Jovie? 💜

The Gutierrez Family, whose daughter Anna has Rett Syndrome, appeared on The View on January 28, 2011.--------------------------------The Rett Syndrome Resea...