Petitioning Brain Injury Association of America scohen@biausa.org  and 50 others

Encephalitis IS a brain injury.

623
Supporters

Encephalitis IS a brain injury.

A traumatic brain injury (TBI) is caused when an external force impacts and injures the brain.  It is often dramatic and swiftly responded to by professionals and family members.   

An acquired brain injury (ABI) can be from an internal source through a medical problem or disease process which causes damage to the brain. It is often difficult to diagnose and difficult to understand. 

One ABI is encephalitis.  Being an invisible brain injury, encephalitis is often not clearly understood.  It’s too easy to assume that because an ABI survivor LOOKS okay, they must BE okay.

There are two types of encephalitis; infectious (aka viral) encephalitis and autoimmune encephalitis.  With infectious encephalitis, the immune system is activated by something foreign in the brain – usually a virus.   In autoimmune encephalitis, the immune system has been activated by something foreign or abnormal elsewhere in the body. 

Worldwide it has been estimated that around 40% of encephalitis cases are infectious, 40% are due to unknown causes and at least 20% are autoimmune.

One example of mosquito-borne encephalitis is West Nile, which has had quite an impact in North America.  The CDC reported from 1999-2015  20,265 cases of West Nile virus neuroinvasive disease in the USA.  In 2016, 1,140 cases were reported.   And this is just one type of encephalitis.

Once home from the hospital, encephalitis survivors and caregivers search for information and support.  When they search the website of their local Brain Injury alliance, association, network or society they usually come up empty-handed!

Encephalitis can be an invisible disability as a survivor appears healthy but is struggling with serious neurological issues.   Often, encephalitis survivors do not realize that many of the issues they struggle with following their acquired brain injury are parallel (if not identical in many cases) to the issues dealt with by survivors of all types of brain injury.  If encephalitis could be recognized by every Brain Injury alliance, association, network and society in North America, survivors and their families would have an excellent local information resource.

The University of Maryland Medical Center tells us that there are about 10,000 - 20,000 cases of encephalitis reported each year in the United States.  (Source: Viral encephalitis | University of Maryland Medical Center.) This statement speaks only of infectious (viral) encephalitis and does not include autoimmune encephalitis.

Encephalitis Global is a USA non-profit organization.  It was originally operated by two encephalitis survivors, Ingrid Guerci (New York, USA) and Wendy Station (Vancouver, Canada.) Their first Annual FACES Encephalitis Conference was held in Ottawa Canada in 2002; the most recent was held in Dallas Texas in 2017.  Encephalitis Global shares information and support via their Encephalitis Global/Inspire Forum which welcomes more than 20 new members every week.  With more than 6,000 members, this Forum is the largest global online encephalitis support network in the world.  (Source: International Encephalitis Consortium ) Encephalitis Global also shares information via Facebook, podcasts, twitter, quarterly newsletter and YouTube.

In October 2004, the President of Encephalitis Global was an invited guest to testify to Congress in Washington DC to explain the impact of mosquito-borne encephalitis.

The National Organization for Rare Disorders in the USA shares Encephalitis Global with people who are struggling to find more information.  

Encephalitis Global is an excellent starting point for people seeking further information resources on specific types of encephalitis.  We very often direct people to other encephalitis groups and websites.

Encephalitis Global would be very happy to offer speakers on the topic of encephalitis to local Brain Injury alliances, associations, networks and societies in North America.  We also would be happy to share our Information Brochure.   

Encephalitis is a genuine and serious brain injury.   We ask that a link to Encephalitis Global (www.encephalitisglobal.org) be offered at the website of every Brain Injury alliance, association, network and society in North America.  In this way, encephalitis survivors and caregivers would swiftly find information and support. 

On behalf of the people we help every day, we salute you and we thank you. 

This petition will be delivered to:
  • Brain Injury Association of America
    scohen@biausa.org
  • United States Brain Injury Alliance
    director@wybia.org
  • Brain Injury Alliance Washington
    admin@biawa.org
  • Brain Injury Alliance Oregon
    biaor@biaoregon.org
  • Brain Injury Alliance Idaho
    info@biaid.org
  • North Dakota Brain Injury Network
    info@ndbin.org
  • Brain Injury Alliance of South Dakota
    dahschumacher@hotmail.com
  • Minnesota Brain Injury Alliance
    info@braininjurymn.org
  • Brain Injury Alliance Wisconsin
    admin@biaw.org
  • Brain Injury Association of Illinois
    info@biail.org
  • Brain Injury Alliance Iowa
    info@biaia.org
  • Brain Injury Association Missouri
    info@biamo.org
  • Brain Injury Association of Louisiana
    info@biala.org
  • Texas Brain Injury Alliance
    info@texasbia.org
  • Brain Injury Alliance of Oklahoma
    braininjuryoklahoma@gmail.com
  • Brain Injury Alliance Nebraska
    cindy@biane.org
  • Brain Injury Alliance New Mexico
    info@braininjurynm.org
  • Brain Injury Alliance of Colorado
    info@BIAColorado.org
  • Brain Injury Alliance Utah
    info@biau.org`
  • Alaska Brain Injury Network
    edonnelly@alaskabraininjury.net
  • Brain Injury Association of Mississippi
    ljenkins@msbia.org
  • Brain Injury Association of Tennessee
    apearson@braininjurytn.org
  • Brain Injury Association of Kentucky
    info@biak.us
  • Brain Injury Association Indiana
    info@biai.org
  • Brain Injury Association Michigan
    aweston@biami.org
  • Brain Injury Association Florida
    admin@biaf.org
  • Brain Injury Association Georgia
    jane@braininjurygeorgia.org
  • Brain Injury Association of North Carolina
    bianc@bianc.net
  • Brain Injury Association Virginia
    info@biav.net
  • Brain Injury Association of Maryland
    info@biamd.org
  • Brain Injury Association Pennsylvania
    info@biapa.org
  • Brain Injury Alliance New Jersey
    info@bianj.org
  • Brain Injury Association New York State
    info@bianys.org
  • Brain Injury Alliance Connecticut
    general@biact.org
  • Brain Injury Association Rhode Island
    braininjurycenter@biari.org
  • Brain Injury Association Vermont
    support1@biavt.org
  • Brain Injury Association New Hampshire
    john@bianh.org
  • Brain Injury Association Washington DC
    info@biadc.org
  • Brain Injury Canada
    info@braininjurycanada.ca
  • Southern Alberta Brain Injury Society
    sabis@sabis.ab.ca
  • Brain Injury Alliance
    contact@braininjuryalliance.ca
  • BC Brain Injury Association
    brittany@seatoskymeetings.com
  • Manitoba Brain Injury Association
    INFO@MBIA.CA
  • Brain Injury Association New Brunswick
    biacnb@icloud.com
  • Newfoundland Labrador Brain Injury Association
    nlbia2011@gmail.com
  • Brain Injury Association Nova Scotia
    info@braininjuryns.com
  • Ontario Brain Injury Association
    obia@obia.on.ca
  • Brain Injury Association Prince Edward Island
    info@biapei.com
  • Quebec Brain Injury Association (RAPTCCQ)
    info@raptccq.com
  • Saskatchewan Brain Injury Association
    info_sbia@sasktel.net
  • test
    encephalitisglobal@shaw.ca


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