25 September - International Ataxia Awarness Day

25 September is International Ataxia Awareness Day. 

Let your friends doctors, neurologists, educators know.

- JR

National Contact: Michael Parent Local Contact: Executive Director mike@ataxia.org (763) 553-0020 SIXTEENTH ANNUAL INTERNATIONAL ATAXIA AWARENESS DAY

Chances are that you have never heard of ataxia. That is why the National Ataxia Foundation and other ataxia organizations throughout the world have declared September 25, 2015 as “International Ataxia Awareness Day” to help get the word out about ataxia. Ataxia is a group of rare and often fatal degenerative neurological disorders.

An estimated 150,000 people in the United States are affected by ataxia. Symptoms are progressive and often impact coordination, hearing, vision, and speech. Ataxia affects both genders and all ages, but too often ataxia strikes children and young adults. At this time, there is no effective treatment or cure for ataxia. “The National Ataxia Foundation was established in 1957 and is dedicated in serving ataxia families through research, education, and support services,” says Michael Parent, the Executive Director of the National Ataxia Foundation.

 Parent continued, “Ataxia can affect anyone at any time and is caused by either a recessive or dominant gene. There are also sporadic forms of ataxia which have no known genetic link or family history.” In the dominant forms of ataxia, each child born has a 50/50 chance of developing the disorder. In the case of recessive forms, each child born has a 25% chance of being affected, a 50% chance of being a carrier, and only a 25% chance of not being affected or a carrier of the gene. 

In the recessive forms of ataxia, many times people do not know that they carry an ataxia gene until their child begins to display signs of in-coordination. (Please share your personal story on how ataxia has impacted you and your family as part of this press release.) To find out more about ataxia, visit the National Ataxia Foundation’s website at www.ataxia.org.

 You may also write the Foundation at 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752, email at naf@ataxia.org, or call (763) 553-0020.

Ataxia Awareness Day

Creating Ataxia Awareness

The goal of IAAD is for every individual to participate in some activity, creating awareness about ataxia. You could share something you know about ataxia with one other person who has never heard of it, educate a group of people by speaking at a school or civic group, contact the media, or raise financial support. International Ataxia Awareness Day has grown over the years, and more ideas keep coming in. You can download the IAAD kit which contains ideas for involvement, and view the Ataxia Presentation.

Get Involved

We welcome you to share your experiences and ask you to submit your tried and true activities so that we may include them in future guides, giving inspiration and direction to others as they get involved in IAAD.

International Ataxia Awareness Day Kit (IAAD Kit)

Thank you for your interest in International Ataxia Awareness Day and the National Ataxia Foundation. This awareness kit is your guide to promoting International Ataxia Awareness Day in your community.

The kit includes the following:

• Press Release
• Proclamation
• Awareness Poster
• Additional Items Available
• IAAD Items
• "Ataxia is not a Foreign Cab" Items
• Items Order Form
• Opportunities & Ideas for Involvement
• Information on how to Create Ataxia Awareness
• Much more?

https://www.ataxia.org/events/international-ataxia-awareness-day.aspx

What is Ataxia? Ataxia and Cognitive Problems

From the National Ataxia Foundation, a great handout:

FREQUENTLY ASKED QUESTIONS ABOUT...

Cognition and Emotion in Cerebellar Disorders

Are problems in the areas of cognition and emotion related to the cerebellar damage in ataxia?

Yes, they can be. The cerebellum has long been known to be important for motor control, and people with ataxic disorders experience motor difficulties including wide-based and unsteady gait (ataxia), incoordination of the arms and legs, slurred speech, and eye movement abnormalities. We now know that the cerebellum, like the cerebral cortex, has some parts that are critical for movement, and other parts that play a role in cognition and emotion. The motor cerebellum is linked with the motor cortex that governs movements; whereas non-motor regions of the cerebellum are linked with cerebral cortical “association” areas important for thought, reasoning, motivation, memory and feelings. Damage to the non-motor cerebellum disrupts these cerebellar links with cerebral cortical thinking areas, and can lead to difficulties in intellectual functions and to changes in mood and personality. Ataxic disorders may also produce neurodegeneration in parts of the cerebral cortex important for intellect, another reason why ataxia patients may experience problems with these functions.

What types of psychological problems may be caused by cerebellar damage or disorders?
The cerebellar cognitive affective syndrome is the set of problems that arises when the non-motor cerebellum is damaged. It includes impairments in executive function, visual-spatial analysis and selected deficits in language skills as well as changes in personality and behavior. There may be difficulties with multi-tasking,

planning, and organizing. Tasks of every day life that require intellectual flexibility and that were previously performed automatically may require conscious effort and new strategies. There may de difficulty expressing thoughts logically and coherently, and memory problems, particularly with working, or scratch pad, memory. Mood changes include depression, apathy, irritability and limited frustration tolerance. Psychosocial interaction may be impaired, particularly in children with cerebellar damage. Dementia is uncommon in cerebellar disease, but can be a problem in those ataxic disorders that affect widespread areas of the cerebral cortex. The role of the cerebellum in dyslexia, attention deficit hyperactivity disorder, autism spectrum disorders, schizophrenia, developmental delay and panic disorder, is under active investigation.

Why is this important for the ataxia patient?
Cerebellar patients and families generally find it helpful to know that cognitive and psychiatric problems may occur as a direct result of the illness. These challenges, beyond motor control, are not “in their head”, rather, they are in their brain. These difficulties are not the fault of the affected individual, family members or health care providers. It is also useful to know that the stress of chronic illness and the social changes that result may place additional burdens on patients and families. Recognizing the brain basis of these mental and mood changes, along with challenging social and psychological issues that come with the illness, is the essential first step leading to treatment. Parents of children with developmental delay from cerebellar disease may have to deal with many special psychosocial and intellectual challenges, even if there is only minimal or no ataxia. 

National Ataxia Foundation
2600 Fernbrook Lane, Suite 119 • Minneapolis, MN 55447-4752
Phone: (763) 553-0020 • Fax: (763) 553-0167 Email: naf@ataxia.org • Website: www.ataxia.org 

PDF handout here

http://www.ataxia.org/events/2013-Presentations/Saturday/Schmahmann_2013.pdf