Preterm Lung Health Priority Setting Partnership

The Children’s Lung Health Term and the Preterm Community Reference Group at the Telethon Kids Institute would like your help in selecting the 10 research priorities you think are the most important.

They want to know what you, the community, think are the most important ideas for future research into the long term lung health of babies, children, and adults born prematurely.

You can find the survey here: https://curtin.au1.qualtrics.com/jfe/form/SV_eLnkhUrH8gG8fkO

We encourage everyone eligible to participate.

Nicu graduate onesies

We are so in love with this gorgeous new product! Leaving hospital is such a huge milestone and to help families celebrate we have these sweet NICU graduate onesies.

They are newborn ‘0000’ Bonds short sleeves, super soft onesies designed to fit a baby of approx 3kg or 56cm long. They have NICU graduate printed across the chest area in mint green.

Available to ship throughout Australia they make the perfect gift!

All funds raised through the purchase of products from our webstore are returned to the community through our programs. Being 100% volunteer run, every dollar makes a difference!

Term 3 Developmental Playgroup

Since the start of the year we have received quite a few contacts from families who are desperately seeking assistance for their NICU graduate who has just started Kindy. Sadly they have not received any early intervention services in the toddler years and the Kindy teachers have now flagged that there is an issue requiring diagnosis and assistance in the classroom. This is really confronting news, especially since we have a strong follow up program in WA but also because Developmental Paediatricians are so challenging to get in to see right now!

Whilst our program is no a substitute for 1-1 therapy, nor is it a diagnostic service it can give you valuable information to assist you to navigate the system and advocate for your child in the toddler years. So much growth and development occurs in the early years, it’s important to maximise every opportunity to help prevent issues in the longer term.

Enrolments for Term 3 of Developmental Playgroup are now open. With places available at both Coolbinia and Canning Vale. Playgroup is open to any child in WA aged 6m actual age to 3 years of age who was admitted to a Neonatal Unit after birth.  Neonatal Unit admission can be for any reason including but not limited to premature birth, sick full term, or surgical requirements.  The cost of this program is heavily subsidised by grant funding, our fundraising efforts and generous donors.  You can enrol for Term 3 via our webstore here:

https://www.tinysparkswa.org.au/shop

Community reference group opportunities

Do you have lived experience with prematurity or RSV?

Do you want to use that experience to make a difference to others?

Our friends at Telethon Kids Institute are currently recruiting for two groups:

• Respiratory Syncytial Virus and other Acute Respiratory Infections Community Reference Group (RSV-ARI CRG)

• Preterm Community Reference Group

More information on the RSV_ARI CRG can be found here. The closing date listed here is late May however we have confirmation they will continue recruiting through June. Please send your EOI to Megan.Baker@telethonkids.org.au

The Preterm CRG meets quarterly and has several vacancies. They are particularly keen to hear from those with diverse backgrounds, Dad’s and adults who were born preterm although they also welcome your EOI if you are outside of these groups. If you are interested in finding out more please sent an EOI to Mitch.Messer@telethonkids.org.au

Community award for cofounder

We wish to extend a huge congratulations to our Chairperson and Co-founder Amber on being awarded the City of Rockingham Community Citizen of the Year at today’s Australia Day Awards. Amber makes a significant contribution to the health and wellbeing of children and families on a local, national and international level. Along with being the driving force behind Tiny Sparks, she volunteers her time to passionately advocate for others with a number of other organisations such as Telethon Kids Institute and the Child and Adolescent Health Service. Bravo Amber!