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

How common is ataxia in childhood?

Neurology. 2013 Nov 27

Prevalence of ataxia in children: A systematic review.

Musselman KE, Stoyanov CT, Marasigan R, Jenkins ME, Konczak J, Morton SM, Bastian AJ.

Author information

Abstract

OBJECTIVE:

To estimate the prevalence of childhood ataxia resulting from both genetic and acquired causes.

METHODS:

A systematic review was conducted following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) statement. Five databases were searched for articles reporting a frequency measure (e.g., prevalence, incidence) of ataxia in children. Included articles were first grouped according to the World Health Organization (WHO) regions and subsequently classified according to etiology (genetic, acquired, or mixed). Each article was assessed for its risk of bias on the domains of sampling, measurement, and analysis. Incidence values were converted to prevalence estimates whenever possible. European prevalence estimates for different etiologies of ataxia were summed to gauge the overall prevalence of childhood ataxia.

RESULTS:

One hundred fifteen articles were included in the review. More than 50% of the data originated from the Europe WHO region. Data from this region also showed the least susceptibility to bias. Little data were available for Africa and Southeast Asia. The prevalence of acquired ataxias was found to vary more greatly across regions than the genetic ataxias. Ataxic cerebral palsy was found to be a significant contributor to the overall prevalence of childhood ataxia across WHO regions. The prevalence of childhood ataxias in Europe was estimated to be ∼26/100,000 children and likely reflects a minimum prevalence worldwide.

CONCLUSIONS:

The findings show that ataxia is a common childhood motor disorder with a higher prevalence than previously assumed. More research concerning the epidemiology, assessment, and treatment of childhood ataxia is warranted.