TSCNZ NEWS
Research opportunties
Families from 18 countries have joined the TANDem-2 study so far, let's put New Zealand on the map!
TAND (TSC–Associated–Neuropsychiatric–Disorders) includes (among other things) behaviour, intellectual disability, autism, learning difficulties and mental ill health.
The TAND checklist is a tool to guide conversations between individuals with TSC or caregivers & health care professionals.
The ‘BEOND’ study is open to families with TSC from all around the world!
Parents/caregivers of children and adults with TSC are asked to complete a survey that asks about a range of needs and abilities. The survey takes about 60 minutes to complete, which can be done online or via post.
Every family that takes part will receive a personalised feedback report which summarises their survey answers, putting the information back into their hands.
The survey will run for the next 20 years. Families are welcome to take part every couple of years to see how their answers have changed with time. By collecting over many years, we hope to get a much better insight into development in TSC.
You can learn more and take part here: www.cerebranetwork.com/beond-tsc
Other news
Neurological Alliance Train 5. Keep 5. Election Campaign
TSCNZ is a member of the Neurological Alliance of New Zealand; a collective of organisations which aims to lead and advocate for quality lives and appropriate investment for neurological conditions in Aotearoa New Zealand. The Alliance is reaching out to the 1 in 3 people affected by a neurological condition, including those with TSC. We encourage New Zealanders affected by TSC to call on the politicians and candidates in your constituencies to commit to the campaign asks...
We are asking politicians for two straightforward party commitments:
-
Fund two additional public hospital neurology positions each year. This would allow New Zealand to train five and keep five, rather than continuing to lose specialists to private practice or overseas because funded roles are not available.
-
Commit to a national neurological workforce strategy. New Zealand needs a planned approach to current and future neurological demand, including training, recruitment, retention, regional access, follow-up care and the needs of people living with chronic neurological conditions.
What is TSCNZ doing to help the campaign?
-
We have emailed a letter to all 123 current MPs (read our letter here)
-
We will be promoting the campaign on our social media pages and newsletters
What can TSCNZ members do to help the campaign?
-
Raise awareness by sharing/liking our posts
-
Create your own posts using these tiles:
-
Download a pdf of the campaign infographic here
-
Download this letter, add your details, print & send it to your local MP for free using this address: Freepost Parliament
Private Bag 18 888
Parliament Buildings
Wellington 6160 -
Alternatively, email the letter to your MP - find out their email address here
email lisa@tsc.org.nz if you'd like help to contact your MP
Call us for Questions
+6422 499 0664
Volunteer Your Time
We'd love to hear from you and suggest effective ways you can assist our organisation!