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Everyday Life with Growth Conditions: A Global Patient Survey

Everyday Life with Growth Conditions: A Global Patient Survey

ICOSEP has shared it’s first ever Quality of Care survey report.
 
ICOSEP, the International Coalition of Organizations Supporting Endocrine Patients, has launched this international report during 2025 Children’s Growth Awareness Week, sharing key insights into the quality of care globally for patients with growth conditions.
 
Read the ‘Everyday Life with Growth Conditions: A Global Patient Survey’ PDF here or click the yellow button.
Meet Magnificent Max 🐶

Meet Magnificent Max 🐶

Meet magnificent pup Max 🐶

Our new children’s storybook is here. Join magnificent pup Max in this heart-warming family story about Max’s journey beginning injections to help him grow.

We’re so excited to launch our latest storybook during this year’s Children’s Growth Awareness Week, buy your copy through our online shop: childgrowthfoundation.org/max-book or see more below.

81 in stock

A day in the life of: Lorelei “Kiwi” Smith

A day in the life of: Lorelei “Kiwi” Smith

A day in the life of: Lorelei “Kiwi” Smith

Kiwi, age 8

Growth condition: Sotos syndrome

Typical morning: Kiwi is usually cuddled up under her favourite blankies and her stuffed animals, and removing her isn’t always easy. I change her, get her dressed, and I do her morning medications and her morning formula in her feeding tube. If it’s a weekday, she goes to school. She is in 3rd grade.

Typical afternoon: Sometimes she’s home playing with toys and watching her favourite show, or she’s on her way to one of many doctor appointments, an outing with family, or school.

Typical evening: Kiwi spends time with her big brother, plays in the sink sometimes while Mom starts to get dinner prepared, and watches her favourite show. She has her night-time medications and pm tube feeding, then she rides her stair lift up to her bedroom and gets tucked in for bed.

My favourite thing to do is: Watch Puppy Dog Pals or play in the sink (I love water!).

My least favourite thing is: When I have to stop doing something I’m really enjoying. I don’t like having to stop!

The best thing about having Sotos syndrome is: At 8 years old, I’m already almost as tall as Mommy, so that’s pretty cool!

The most challenging thing about having Sotos syndrome is: Frequent wardrobe changes, Mommy needs to buy new clothes all the time because I outgrow everything so fast.

One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: Try to ignore people out there who might stare a little too long or make comments, their ignorance isn’t your problem.

One thing I want to share with others about life with a growth condition is: It’s a unique journey!

Virtual Cuppa & Chat: SRS

Virtual Cuppa & Chat: SRS

Our SRS Virtual Cuppa & Chat

This Virtual Cuppa & Chat will be the second in our series of topic specific events, and will be dedicated to talking about Silver-Russell syndrome (SRS).

Whether you have a diagnosis or suspected diagnosis of SRS please join us to share your experiences and support each other. Everyone is welcome, whatever stage of the journey you are on.

These supportive sessions are run by the CGF’s nursing team, Sally and Lisa, and are a lovely opportunity to meet virtually with other parents and carers in the growth community, sharing experiences and asking questions in a safe, welcoming space.

The SRS Virtual Cuppa & Chat is on Wednesday 15th October, 12-1pm on Zoom. Email [email protected] to register. Please note places are limited to a maximum of 10 attendees.

Board of resources for Children’s Growth Awareness Week

Board of resources for Children’s Growth Awareness Week

Board of resources for Children’s Growth Awareness Week

We’d love your help raising awareness during Children’s Growth Awareness Week (CGAW) and on International Children’s Growth Awareness Day (ICGAD).

To help our community raise awareness during CGAW and on ICGAD we’ve created a public board full of resources: https://trello.com/b/LI62Wozm/cgaw-icgad-2025

On this board you’ll find images, videos, infographics and more that you can download and share during CGAW, 14-20 September, and to mark ICGAD on 20 September.