Welcome to our July eNewsletter. In this issue:

• Thank a health care professional who has gone 'over and above' for your family
• Check out the new TAND Toolkit App
• Read the latest research on patient-centred trials

Jackie, CEO, TSA 

This annual award is given to a health care professional to recognise their 'over and above' efforts for TSC patients and their families. Nominations come from you, the TSC Community. It's a great way to say thanks.

Everyone who is nominated is told that they have been nominated and we know from their feedback that it means a lot to them. 

Nominations for the 2026 Award are open until the end of this month. 

The new TAND Toolkit App helps you track your or your loved one’s neuropsychiatric challenges, as well as access a range of resources and guidance about common TAND issues, including sleep, anxiety, learning difficulties and behaviours of concern. 

If you're not yet a member of TSA, please consider joining. Memberships, which start at just $35 per year ($30 of which is tax deductible), help TSA ensure we can keep providing free, essential information to everyone in Australia affected by TSC, no matter where they live and whatever their circumstances. 

This Australian study explored working alongside people with lived experience, caregivers, health care professionals, researchers and industry partners to co-design a more patient-centred clinical trial model. The aim was to create a trial that is practical, inclusive and measures outcomes that matter most to people living with rare epilepsy.

Most people living with TSC experience epilepsy at some point in their lives, and for some people seizures can be difficult to control with medication alone. Understanding the range of treatment options, including when epilepsy surgery may be considered, is an important part of managing TSC.

In this TSA online education event, Dr Emma MacDonald-Laurs, Paediatric Neurologist at the Royal Children’s Hospital in Melbourne, discusses epilepsy in TSC and explores the role of epilepsy surgery as a strategy for seizure management.