Ataxia
It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change - Charles Darwin
image by: Orange County Ataxia
HWN Suggests
Gravity… stop pulling!
I am born with this body complete with an advanced set of muscles, nerves, blood system, organs, energy production facilities and the brain on top to help maintaining the body upright standing, walking and moving around without having to think about the word gravity.
It is supposed to be excellent team work. I must say that the team is doing a bad job and gravity is doing its best the pull me down. Good thing the mind on top is strong and willing to carry the load and to keep moving.
It is really hard work, living with this ataxia monster, and we are allowed to SIGH sometimes. Then keep going.
Source: Gunnhildskinlove, Gravity… stop pulling!, Extreme Living, March 1,…
Resources
It’s time to find new targets for brain diseases instead of just pursuing old ones
The appeal of pursuing incremental improvements with medicines that act on old, familiar targets is understandable. Pursuing known targets and mechanisms is less daunting to investors and seems less risky to pharmaceutical company executives. But repeatedly filling drug-development pipelines with agents that act on the same handful of CNS targets has done little to help patients with neurodegenerative diseases. Our industry needs to accept, if not embrace, risk taking with new drug targets.
Acute Ataxia in the ED
It represents a wide range of overlapping symptoms. The differential diagnosis is wide and includes benign as well as life-threatening diseases.
Survival of the Fittest: Fighting Friedreich's Ataxia
A short documentary on a family's fight with the progressive neuromuscular condition Friedreich's Ataxia.
When Parents Start Companies to Cure Their Children
For years, Brad Margus has juggled two goals as chief executive: Make money, and find cures for his children. He just co-founded a startup, Exigence Neurosciences Inc., in part to seek treatments for his two sons who have ataxia-telangiectasia, or A-T, a rare progressive and eventually fatal neurological disease.
Gravity… stop pulling!
It is really hard work, living with this ataxia monster, and we are allowed to SIGH sometimes. Then keep going.
6 Tips for Coping with a Debilitating Disease
Life with a rare neuromuscular disease creates awkward situations...
Ataxia Canada
To provide an association for people suffering from familial ataxias and those working with the disease, either as immediate caregivers or as health professionals and researchers. To make health professionals, political decision-makers and the population in general aware of the disease and of its impact on the physical and psychological health of the victims as well as on the professional and financial aspects of their lives...
Ataxia Foundation Ireland
“To enhance quality of life for all of us with an Ataxia. We lead positive change and deliver value through experience, information, advocacy and service”.
Ataxia Support
Welcome to Ataxia Support Network a patient to patient support network for patients, family members and caregivers effected by Ataxia.
Ataxia UK
Ataxia UK is the leading national charity for people with ataxia, their families and carers. We provide support and aim to find treatments and cures.
It Takes Hope
A journey I didn't ask for...but a path full of God's grace and hope. I hope to articulate what my life is like with a body that won't cooperate but a heart that longs to be faithful to the promises not yet seen or even felt.
National Ataxia Foundation
The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education, and research.
The Ataxian
How would you react to a life debilitating and fatal illness? In “The Ataxian,” one man shows the world that it is possible to take action and find hope under even the most life-threatening and daunting of circumstances.
A-T Children's Project
We fund international research in an effort to find life-improving therapies and a cure for ataxia-telangiectasia.
Friedreich’s Ataxia Research Alliance
FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.
Ride to cure FA
rideATAXIA is a nation-wide program of bike rides that welcomes people of all abilities to ride, and to raise funds for FARA's mission to treat and cure FA through research.
The FA Project
The FA Project is committed towards creating awareness of Friedreich's Ataxia, a life altering disease. We aim to educate the public by increasing the visibility of related information & resources and creating a support system for those afflicted with FA. Ultimately it is our goal to provide those living with FA the tools and resources necessary to lead the best life possible.
FP Notebook
Ataxia is a Movement Disorder (in the hyperkinesia sub-category)
MayoClinic
Ataxia describes a lack of muscle control during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect movement, speech, eye movement and swallowing.
MedicineNet
Ataxia describes the lack of muscle coordination when a voluntary movement is attempted. It may affect any motion that requires muscles to work together to perform a function, from walking to picking up an object to swallowing. Ataxia is a sign of an underlying medical problem and is not a disease.
National Institute of Neurological Disorders and Stroke
There is no cure for the hereditary ataxias. If the ataxia is caused by another condition, that underlying condition is treated first. For example, ataxia caused by a metabolic disorder may be treated with medications and a controlled diet. Vitamin deficiency is treated with vitamin therapy.
NHS
Ataxia usually results from damage to a part of the brain called the cerebellum, but it can also be caused by damage to other parts of the nervous system. This damage can be part of an underlying condition such as MS, or can be caused by a head injury, lack of oxygen to the brain, or long-term, excessive alcohol consumption. Hereditary ataxia is caused by a faulty gene passed on by family members, who may or may not be affected.
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