DONATE NOW

  • Image

Virtual Coffee and chat with Alanna Gayko from the University of Newcastle, Australia

17 August 2021

Dear Families
Zoom: Virtual Coffee and chat with Alanna Gayko from the University of Newcastle, Australia
Friday 3rd September, at 11am (AEST)
Please join us for this wonderful opportunity to hear from Alanna Gayko. Alanna has completed her master’s thesis at the University of Newcastle, on diagnostic delay of NCL in Australian and New Zealand children, which has now been uploaded to NOVA. Alanna has been a friend of BDSRA Australia since she met co-founder, Vanessa and her Batten Angel Jordan over 20 years ago. Alanna has 40 years of nursing experience and the desire to make a difference for the Batten families she has come to know. We celebrate her published work and we thank Alanna for her willingness to discuss her work and answer any questions on the topic.
Alanna would like to thank BDSRA Australia and all the families who participated in this study.
This coffee & chat is a relaxed way to connect with other families and to discuss the diagnostic journey of our kids affected by Batten Disease.
Please RSVP: info@bdsraaustralia.org to receive the ZOOM details and send us any particular questions you would like to ask Alanna.
For those that are interested in reading up before the day, we have attached the link from Alanna.
NOVA
An exploration of the diagnostic journey of children with Neuronal Ceroid Lipofuscinosis
(NCL)
ZOOM is a video conferencing platform and can be searched and downloaded onto either your smart phone, tablet, laptop or desktop computer.
If you don’t have a ZOOM account and would like some telephone support setting it up, please email Julie: info@bdsraaustralia.org