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WHEN SPEAKING ABOUT ALS | Fact Sheet #2 LANGUAGE GUIDELINES If you are speaking on behalf of the ALS Society, please prepare by carefully reviewing this information. WHAT TO CALL THIS DISEASE NOT OUR PATIENTS SOME MORE FACTS ABOUT ALS ALS - as simple as that People with ALS are patients, but they are Approximately 3,000 Canadians current- not OUR patients. The ALS Society does not ly live with ALS ALS, sometimes called Lou Gehrig's disease provide medical care. No need to say "amyotrophic lateral sclero- Suggested alternative: Every day two or three Canadians die of ALS sis". It is a mouthful, easy to stumble over or mispronounce. People with ALS ALS is the most common cause of neuro- Using ALS builds stronger recognition of the Clients of the ALS Society acronym. logical death in Canada INACCURATE STATEMENT WHAT IS ALS? ALS can strike anyone "The mind remains intact" is inaccurate. • Male or female ALS is a fatal neuromuscular disease. ACCURATE STATEMENT • Any ethnic origin Nerve cells degenerate. • At any age Voluntary muscles weaken and become "The mind may remain unaffected" is • Some have been diagnosed as teens immobile. accurate. • Usual onset is in middle age The senses are unimpaired and the intel- "The intellect may remain unaffected" is lect may remain unaffected. accurate 90% die within three to five years of diagnosis PREFERRED LANGUAGE (Research is showing that an element of • Some will die within a few short months dementia is often present in those with • Some will live longer than five years ALS.) It is preferable to say: Canadians with ALS... ADJECTIVES FOR ALS Some cases are hereditary People living with ALS... • Less than 10% are familial ALS devastating Those affected by ALS... • ALS is not contagious catastrophic The ALS Society serves those living with ALS ALS affects the whole family The ALS Society serves those affected by ALS (which includes the wider circle of • 90% of care is shouldered by family care family and caregivers) givers DO NOT USE PALS (person with ALS) • ALS is a costly disease – THE ALS SOCIETY emotionally, physically and financially Many people with ALS do not like this ref- PROVIDES information to build awareness erence. SUPPORTS people affected by ALS to serve Ten Provincial ALS Societies provide However, if a person with ALS wishes to use immediate needs quality care to those affected by ALS PALS in referring to themself, that is, of FUNDS research for a cure. course, their choice. ALS SOCIETY OF CANADA • LA SOCIÉTÉ CANADIENNE DE LA SLA 265 Yorkland Blvd, Suite 300 Toronto, Ontario M2J 1S5 - 1-800 267-4257 - www.als.ca January 2005 ALS. Three letters that change peoples lives. FOREVER..

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