www.kinderneurologie.eu

Hello!

My 3 year old daugther has early onset de novo complicated SPG3A. I have joined forces with another mum, Bridget, whose 18 year old son has de novo complicated SPG4.

We have organised a survey. Our main goals are to create an informal register, help parents connect and inform research where possible.

You can find further information on the survey and the questions at this link: https://forms.gle/hAowgsDGeSntQbgX9

I hope that parents of children with HSP or individuals who had HSP symptoms before the age of 18 themselves can complete it.

Thanks!

I completed it. Great sharing!

Hello,

It's wonderful that you and Bridget are working together to support families affected by HSP (Hereditary Spastic Paraplegia) and to contribute to research. Sharing information through a survey can be a valuable resource for both parents and researchers.

I hope that many parents of children with HSP and individuals with HSP symptoms before the age of 18 will participate in your survey to help advance understanding and support for this condition.

Best wishes for the success of your initiative!
Omhoog (Upward)

I am unable to read articles online very often, but I’m glad I did today. This is very well written and your points are well-expressed. Please, don’t ever stop writing.I’ve even worked at a couple of sites that delete comments that don’t add to the discussion!
http://truediamond.co.uk/