You can now LISTEN to “International Ataxia Awareness Day 25th September with ‘Ataxia and Me’”
Rare Disease Male Support Group – mental health community support. – FibroFlutters Patient Advocacy Organisation | Chronic Illness & Rare Disease Network
International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
On this International Ataxia Awareness Day the Ataxia community can come together to share the awareness of this rare disease.
Ataxia may be the most serious condition you’ve never heard of!
Ataxia is usually caused by damage to the cerebellum, which is the part of the brain that controls movement and coordination. The cerebellum is located at the back of the brain and is often called the ‘small brain’.
The word ‘ataxia’ comes from the Greek ‘a taxis’, which means ‘without order’.
Our mission is to bring back some of the order to the lack of order.
It is the term used for a group of neurodegenerative diseases that affect balance and coordination.
Ataxia is usually caused by damage to the #cerebellum the part of the brain that controls movement and coordination it’s located at the back of the brain aka the ‘small brain’. #Patients Helping Patients #MovementDisorder #IAAD #ataxia @Ataxia_and_Me
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Ataxia-and-me.org will be sharing 25 facts, 1 everyday during September, via their Social media channels. We call this campaign #AtaxiaAdvent.
As well as this ataxia and me.org will be highlighting patient stories from their website www.ataxia-and-me.org
Alongside this campaign Ataxia and me.org have their fundraising charity appeal. Please support us at https://localgiving.org/appeal/At-Home-Super-Heroes-2021/
Ataxia and Me are a partner organisation of FibroFlutters with us mutually supporting the work of each other. Helping to raise awareness of Ataxia is important to improve the understanding of the disease so that people know what it is. Balance and co-ordination illnesses are difficult to live with and can cause many problems with day to day living. Movement is often compromised by dizziness, spatial awareness… and that lack of balance!
Ataxia is raredisease affecting #Balance #Speech and #Coordination
Ataxia and Me are
“Patients Helping Patients”
How did we connect?
Alan Thomas, founder of Ataxia and Me and FibroFlutters CEO Carole Scrafton met through pursuing their advocacy efforts. Carole has problems with Vertigo and often experiences similar symptoms with lack of spatial awareness, but mostly with poor balance and coordination. Although they have different diseases they both share similar health problems and have developed an empathetic relationship as friends, and as patient advocates.
Our advocacy arm ‘ZebraStrutters‘ for rare disease awareness is also proudly in support of this campaign for Ataxia awareness. The following post tells a bit about Ataxia and Me and provides places for resources too. It was our awareness post for 2020.
Thank you for reading and please join in by sharing the campaign posts throughout September.
Wishing you wellness from Carole Scrafton and Alan Thomas.
Flutters and Strutters
FibroFlutters and ZebraStrutters
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients
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