AAC 2025 Las Vegas

[BUG42]

Have just arrived back to live in the UK after 11 transformative years living in New Zealand via the Annual Ataxia Conference in Las Vegas with the National Ataxia Federation and how humbling to be in a room with over 300 Ataxians, along with their supporters/carers with many highlights including current research, networking without being judged and advocacy from US celebrity Science Guy - Bill Nye who has SCA 27b in his family, amongst many others incl Dr Susan Perlman.

I have been aware of my Herediatary Ataxia for over 20 years and received my diagnosis from Perth University Hospital for SCA 42 in 2023 and being with some many fellow Ataxians, a first for me has inspired me to become more involved with Ataxia UK in rasing funds and awareness.

Looking forward to meeting and supporting others on this journey over the coming years

[wobblybee]

Hi🙂Welcome

I’ve been to a NAF Convention…2017 in San Antonio…it was as informative as an AtaxiaUK Conference….but on a much bigger scale.

I’d never heard of Bill Nye until he was mentioned on the NAF Facebook Support Group. But I am familiar with Dr Susan Perlman, she’s an eminent Neurologist, and hosts regular Webinars on Facebook.

My symptoms started as far back as the early 1990s. Despite extensive testing…I’ve been unable to get a reason for my diagnosis…still Idiopathic Cerebellar Ataxia.

[paul456]

BUT! Have you come back with a magic cure that’s what we won’t to hear and maybe take 25 years off your age😂 that means I’ll be back to 20 👹

You take care and welcome back.

[BUG42 in reply to paul456]

Hey Paul, Unfortunately, no magic cure but spending time with so many Ataxians was empowering and humbling. Some great work happening and looking forward to my activity with Ataxia UK 🙏