Ataxia_aware CIO 1184030 (previously Ataxia_and_me

#Ataxia is a #raredisease
affecting #Balance #Speech and #Coordination

#Patients Helping Patients
#StrongerTogether
#MovementDisorder

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

Are you aware on the 25th of September is International Ataxia Awareness Day? Join us in being #AtaxiaAware on the road to #IAAD

#Ataxia #Awareness #RareDisease #PatientsHelpingPatients #StrongerTogether #Genome

[Unique @Unique_charity]

Don't forget to tag us in your posts! We don't want to miss the great work you're doing to help us raise awareness for our community.

And use #RareChromoDay for the extra boost too!

[Unique @Unique_charity]

🧬Happy Rare Chromo Day!

Today we celebrate every family affected by a rare chromosome and gene disorder around the world, share stories, raise awareness and try to reach more families looking for support and information.

https://t.co/aMYuDTtljB

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

@ataxia_aware are supporting
#RareChromoDay with our friends at @Unique - Rare Chromosome Disorder Support Group
#StrongerTogether for #SmallCharityWeek

[Oxford-Harrington Rare Disease Centre @OHRareDisease]

As a founding partner, we welcome the announcement that the Rare Therapies Launch Pad (#RTLP) will become part of @LifeArc in a bid to accelerate the development and access of individualised medicines for people living with rare diseases.
Read more🔗: https://t.co/SevH37eL0N

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

During this #SmallCharityWeek we want to lay out our goals as a small #PatientsHelpingPatients charity.

Thank you to our wonderful #AtaxiaAware community for all of your support! 💙

#Ataxia #Awareness #RareDisease #StrongerTogether #Genetic

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

You can read Beryl's fight to be heard on our website, thank you to Beryl for sharing with us 💙

#Ataxia #Awareness #RareDisease #StrongerTogether #PatientsHelpingPatients #SmallCharityWeek #Medical

[National Institute for Health and Care Research @NIHRresearch]

"I wanted to help my brother."

After Felix was diagnosed with type 1 diabetes at age 7, he and his younger brother Eric both took part in research at @NorthCandMNHS, including D-CYPHR - part of @NIHRBioResource.

Today, they're helping researchers better understand type 1 diabetes and improve care for future families.

Read their story and find out how you can get involved in research: https://t.co/NUfIrBDRNj
#BePartOfResearch

[James Lind Alliance @LindAlliance]

A dedicated Steering Group is at the heart of every JLA Priority Setting Partnership.

Made up of patients, carers and healthcare professionals, Steering Groups guide and oversee the entire PSP process.

Read more about people's experiences of JLA PSPs: https://t.co/lmQ6x0nMtz

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

A reminder of where you can find our socials!

#Ataxia #Awareness #RareDisease

#Charity #Wales #SmallCharityWeek

#StrongerTogether #PatientsHelpingPatients #DNA

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

This Week is #SmallCharityWeek (@SmallCharity_Wk @Small Charity Week
#Ataxia #patient #charity will be supporting the week
( #RareDisease )#charity based in #Wales with a global impact
#DNA the Code for #Life

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

This version of our #Tuesday_Tips focusses on the affects of caffeine on those with ataxia.

If you have any #Ataxia_Tips that you would like to share with us, then you can leave them in the comments!

#Ataxia #Awareness #RareDisease #StrongerTogether #SmallCharityWeek

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

Did you mis our ANNOUNCEMENT:

We are delighted to share that we are getting a new name and a new look! The Ataxia team are still on the same mission to raise awareness for ataxia but we are all very excited to take this next step of our journey with all of you! 💙

#Ataxia

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

A reminder of where you can find our socials!

#Ataxia #Awareness #RareDisease
#Charity #Wales #SmallCharityWeek
#StrongerTogether #PatientsHelpingPatients #DNA

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

ANNOUNCEMENT:

We are delighted to share that we are getting a new name and a new look! The Ataxia Aware team are still on the same mission to raise awareness for ataxia but we are all very excited to take this next step of our journey with all of you! 💙

#Ataxia #Awareness

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

COMING SOON (later today, during #SmallCharitiesWeek

#NEW

#Ataxia #patient #charity

( #RareDisease ) #charity based in #Wales with a global impact
#Patients helping patients
#StrongerTogether

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

Something big is happening... tomorrow to mark our #SmallCharitiesWeek

#Ataxia #Awareness #RareDisease #StrongerTogether #PatientsHelpingPatients #Friedreichs #Cerebelar

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

COMING SOON

#NEW

#Ataxia #patient #charity

( #RareDisease ) #charity based in #Wales with a global impact

#StrongerTogether

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

We are proud to support #Red4Research 💙 ❤️

#Rare4Research aims to get as many people as possible wearing red to demonstrate their support and appreciation for all those participating, undertaking and supporting #Research.

#Ataxia #Awareness #RareDisease #SmallCharityWeek

[James Lind Alliance @LindAlliance]

We are proud to be dressed in red for #Red4Research 2026!

We’re celebrating the vital role research plays in improving healthcare and all the incredible people who make it happen❤️.

#BePartOfResearch