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
- Fundraising for SMA Australia
- The individual /organisation (the fundraiser) responsible for running the event /activity must ensure the event is well planned with the approval of SMA Australia.
- 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.
- 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.
- 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.
- 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.
- The head office of SMA must be contacted for authorisation to conduct raffles.
- Using the SMA Australia Name
- 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”
- Using the SMA Australia Logo
- The SMA Australia’s reputation and goodwill is extremely important. The name and logo can only be used by permission from the head office.
- 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.
- 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.
- Celebrities and SMA Australia Representatives
- 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.
- Media and Public Relations
- If you would like to request a representative from SMA Australia to attend your activity or play a part in the event, allow enough time to source the most appropriate representative (minimum 4 weeks).
- SMA Australia are happy to discuss any ideas you may have for media material, prior authorisation from SMA Australia must be obtained before contacting any media in relation to SMA Australia.
- All printed material, including media releases must be approved by SMA Australia. Printed material must be forwarded to SMA Australia’s head office for approval prior to being printed or circulated.
- SMA Australia is happy to promote your event on its website, however due to the privacy act, will not contact our supporter database about your event/activity.
- Financial Aspects of Your Event
- It is a requirement of the Charitable Fundraising Act that the fundraiser maintains accurate records of income and expenditure and that the monies received in the course of a fundraising appeal be immediately paid into a separate bank account. SMA Australia has a simple form for you to record these details.
- The financial aspects, fundraising, raffles, record keeping and management of the fundraising activity/event are entirely the responsibility of the fundraiser. The fundraiser must comply with any obligations imposed on it by the Charitable Fundraising Act and/or regulations in the relevant state/territory.
For more information in your state/territory regarding other requirements (eg raffles/liquor license etc.), please contact the following which are the states that SMA Australia are authorised in
|NSW||Dept of Gaming & Racing Office of Charities||(02) 9995 0300||www.dgr.nsw.gov.au|
|VIC||Dept of Justice Consumer and Business Affairs||1300 558 181||www.consumer.vic.gov.au|
|WA||Dept of Fair Training: Charitable Collections||(08) 9282 email@example.com|
|TAS||Dept of Treasury and Finance: Tasmanian Gaming Commission||(03) 6233 firstname.lastname@example.org|
|QLD||Dept of Treasury Office of Gaming and Racing||1800 064 848 or (07) 3872 0999||www.qogr.qld.gov.au|
|SA||Dept of Treasury & Finance Revenue Services||(08) 8226 9599||www.pics.sa.gov.au|
- The proceeds of the event and a statement of income are to be sent to SMA Australia within 14 days of the conclusion of the event, unless negotiated with SMA Australia head office.
- SMA Australia is registered under the Charitable Fundraising Act. Individual receipts will be issued for tax deduction purposes for donations of $2 or more.
- If you require tax deductible receipts for donors for your event please request a ‘Donations Log’ spreadsheet to complete and SMA Australia will issue letters and receipts from this.
- When an attendee/supporter has given money in return for goods/services (eg. an event), a tax-deductible receipt cannot be issued.
- Fundraisers undertake all fundraising activities on their own behalf at their own risk. They are not employees or agents of SMA Australia, nor are they acting in any other representative capacity of SMA Australia. Responsibility for any insurance rests solely with the fundraiser. SMA Australia insurances do not cover activities that the fundraiser undertakes. SMA Australia will not be liable for any injury, damage or loss sustained as a result of any fundraising activities. Fundraisers should also be aware that they are not covered by SMA Australia’s public liability insurance.
SMA Australia reserves the right to assess each submission to fundraise on their behalf and at times decline if necessary. It also reserves the right to withdraw its approval for the activity/event at any time if it appears that there is a likelihood of the fundraiser failing to adhere to any of the above terms and conditions.
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