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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

DONATE TO SMA HERE 

ABOUT SMA AUSTRALIA

Spinal Muscular Atrophy (SMA) is a rare, genetic, inherited disease that results in the loss of nerves in the spinal cord and weakness of the muscles connected with those nerves. The muscles most frequently affected are those of the neck and trunk that control posture, those of the leg and arm that control movement and the respiratory muscles which control breathing.

SMA is the number one genetic killer of children under two years of age, yet very few people have heard of the disease; 1 in 30 people carry the defective gene.

People with SMA generally appear normal at birth; the symptoms develop as early as three months in the most severely affected (Type I), around one to two years of age in the less progressively affected (Type II) and more rarely in late childhood or adult years (Type III and IV) in mildly affected individuals.

There is no known cure for SMA; historically, nearly half of those born with Type I SMA die before the age of two. Children with Type II generally die before adulthood. All people with SMA have a higher than normal risk of progressive disability and premature death.

If you would like any further information please visit our website www.smaaustralia.org.au

 

EXTERNAL INDIVIDULAS FUNDRAISING FOR SMA AUSTRALIA

  1. Fundraising for SMA Australia
  2. The individual /organisation (the fundraiser) responsible for running the event /activity must ensure the event is well planned with the approval of SMA Australia.
  3. Once the application to fundraise has been approved, SMA Australia will send the fundraiser a letter confirming our knowledge of your event. You are not authorised to fundraise for SMA Australia until you receive this letter.
  4. The Fundraising activity/event shall be conducted in the fundraisers name and is the sole responsibility of the fundraiser. SMA Australia cannot always under take the coordination of these activities, and its officers cannot always assist in the soliciting of prizes, organising publicity or providing goods and services to assist the fundraiser, in the running of the activity /event.
  5. The fundraiser must abide by all legislation and apply for any permits that may be required. As different states have their own legislation and as a charity we have fundraising ability in some states, please check with us at the office to see if we have a fundraising authority in your state.
  6. If the fundraiser is raising money from the general public they are required to wear a volunteer authorisation card and must explain what they are raising money for.
  7. The head office of SMA must be contacted for authorisation to conduct raffles.
  8. Using the SMA Australia Name
  9. If the fundraiser wishes to refer to or promote SMA Australia, the organisation must be referred to as “Spinal Muscular Atrophy Association of Australia Inc.” sample wording referring to the relationship between the fundraising event/activity would be:

    - “Proudly supporting the Spinal Muscular Atrophy Association of Australia Inc.”
    - “This is a volunteer run event raising money for the Spinal Muscular Atrophy Association of Australia Inc.”
    - “Funds raised are used to support families affected by SMA and for research into the disease”

  10. Using the SMA Australia Logo
  11. The SMA Australia’s reputation and goodwill is extremely important. The name and logo can only be used by permission from the head office.
  12. Each external event will be looked at on a case-by-case basis and it is at the discretion of SMA Australia on the usage of the logo.
  13. Instead of using the logo, SMA Australia can sanction the use of a line stating the relationship between the fundraising event/activity and the organisation.
  14. Celebrities and SMA Australia Representatives
  15. If you wish to approach public personalities you must discuss this with SMA Australia prior to any contact being made. You must not approach celebrities unless specific written approval has been received from SMA Australia. If the fundraiser would like a SMA Australia representative at the event or play a part in the proceedings at least 4 weeks notice needs to be given to the head office of SMA Australia. Please note that because of limited resources a representative may not be available.