We’d love your help to organise a community event in support of people living with TSC. We will work with you to make sure your event is a success. From a dinner or trivia night, to cake stalls and raffles, the options are endless. TSA can help by creating online donation and event pages, provide TSC information, videos, stories, and posters to help explain TSC to your guests.

To get started, please read through our community fundraising guide below, then download and return the Community Fundraising Registration form.

We’re excited that you’re interested in fundraising for us and happy to help or just chat about your plans and ideas, so please contact us.

Community Fundraising Guide

Thank you for helping raise funds for Tuberous Sclerosis Australia (TSA). Your support enables our volunteers and staff to help and support everyone affected by TSC all around Australia. Before you start, you need to review these guidelines to make sure your event is not only successful and fun, but that it is also legal and safe.

How we support your fundraising

We’re happy to hear your ideas for fundraising and work with you to make them a reality. Some examples of how we can help you include:

  • Design a tailored donation webpage for sharing on social media, processing and receipting donations, or you can set one up on mycause
  • Provide videos on TSC to share with your guests or on social media
  • Supply printed brochures and posters about TSC and TSA
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  • Issue an Authorisation to Fundraise granting permission to use our name/logo to raise funds
  • Prepare an endorsement letter you can use to solicit donations and goods for raffles and auctions
  • Our logo for use on your promotional materials (we request the opportunity to approve anything with our logo)
  • A press release for distribution to selected media channels such as local papers and radio stations
  • Promotion of your fundraising event via TSA’s Social Media
  • Inclusion of your fundraising event in our monthly e-newsletter
  • Provide a TSA representative to attend and speak at your event
  • Thank all your major donors and contributors to your event
  • Provide TSC hero T-shirts for selected volunteers to wear at the event
  • Pull up banners to display at your event
  • Our advice and expertise – please call us with any questions and we will guide you as best we can.

We’re also happy to discuss your fundraising needs and talk about other ways we can help you.

We give you authority to fundraise

TSA is legally required to approve and authorise all volunteer fundraising activities. If you are not using Everday hero or if you are running your own fundraising event, you need to:

  1. Fill out the Community Fundraising Registration Form
  2. Send us a copy of your driver’s license, passport or other identity document.

We will then review your planned activity. Keep in mind there may be some activities for which we will not provide approval or support. For example:

  • Events that are high risk;
  • Events that do not fit with the values or integrity of TSA;
  • Events that involve gaming, lotteries or raffles, because there are separate, complex, rules governing these types of activities;
  • Door knocking, because in most parts of Australia special permits are required;

We will discuss your activity with you if we have any concerns. In most cases we will send you an Authority to Fundraise letter. You will need to keep this letter with you when you are fundraising on behalf of TSA. You, as the fundraiser, are solely responsible for your activity. This includes management of the event, finances, prizes and publicity.

Promoting your event

We’d like to help you to explain TSC and the work of TSA to your donors. We can help to draft any materials you need, any media releases and supply logo files. Please discuss this with the TSA team.

Money matters

If your fundraising event incurs expenses and only the net proceeds will be given to TSA, you should discuss this with us. The following guidelines apply:

In most cases, TSA cannot pay directly for your expenses. You can deduct your expenses from the funds you collect.

  • You must submit a budget to TSA along with your Community Fundraising Application Form.
  • Unless otherwise agreed with us, you must achieve a net profit of 70% of all funds raised at any event.
  • You must keep accurate financial records including an explanation of all expenses associated with your event.
  • You must document both the income and expenses on the Community Fundraising Completion form within 14 days of your fundraising event

If your fundraising involves donating a fixed percentage of the sale of goods or services, you can provide TSA with a regular statement of the amount of money collected from sales and the amount being donated to TSA. This money can be directly transferred into the TSA bank account or a cheque can be sent to TSA.

To provide a tax receipt to your donors, you will need to do one of the following:

  1. You can use an online fundraising platform to collect donations. The website can email a receipt directly to the donor. The one that TSA is registered with is myCause. We will consider registering with more platforms; let us know which one you’d like to use.
  2. You can ask your donor to donate via the TSA website. Our website will email a receipt directly to them. We can create a page just for your event.
  3. You can fill out their details on a Donor List and collect the donation from them in cash or a cheque. We can either email or mail a receipt to them.

Public Liability Insurance

If you are holding an event, it is important to ensure there is public liability insurance in place. TSA has an insurance policy that may be used in some circumstances. Please discuss any events that you may be holding or participating in with TSA to ensure there is adequate insurance in place.

Other things to consider

If you are seeking the support of any corporate sponsors, we would like to be involved. These relationships have the potential to be a long term asset to TSA.

I’m ready, what’s the next step?

Download and return the Community Fundraising Registration form and we’ll take it from there. We look forward to supporting your fundraising.

How your support helps

$50    allows us to answer a single support or information request

Our TSC Information Service provides free advice to those affected by TSC.  One call from a family about the importance of early diagnosis and intervention treatments and how to access them can change their child’s life.

$100    allows an individual with TSC or their carer to attend an information event

Our virtual and face to face events provide an opportunity for people affected by TSC to learn more about the disease and meet other people living with TSC. These connections can be life-changing and can help to reduce the sense of isolation.

$250    allows us to update one of our medical information pages

Our medical information pages are the only source of accurate TSC information tailored to the needs of TSC patients and their families in Australia. The significant achievements of TSC research mean that these information pages require regular revision.

Your donation today will help us continue to provide our trusted information and support services for free to everyone affected by TSC by:

  • Maintaining this website, the only online source of accurate and up to date TSC information in Australia
  • Publishing and printing our magazine Reach Out twice a year
  • Providing a TSC Nurse service offering telehealth phone and email support
  • Organising and hosting educational events online for everyone in Australia
  • Advocating for improved services and treatment for families affected by TSC
  • Ensuring TSC affected individuals have access to all the latest global research and advancements in TSC.

Our donors have enabled TSA to champion many life-changing projects in Australia including:

  • Publishing a picture book to help children understand TSC
  • Funding an Australian clinical trial into a new medicine for TSC skin tumours (angiofibromas)
  • Creating New Diagnosis Parachute Packs for families receiving a new diagnosis of TSC
  • Development of a SEALS Genetic Diagnostic Laboratory, the first laboratory in Australia to offer genetic testing for TSC
  • Launching the In Safe Hands Education Resources to help teachers and educators understand how TSC may affect how a child learns.
  • mTOR inhibitor medicines for TSC added to the PBS (Australian Pharmaceutical Benefits Scheme).TSA led the consumer advocacy project to help decision makers understand the impact this medicine can have on those living with TSC.

To find out more about how your donations make a difference, click here to read our latest annual report.

The vast majority of your contributions go directly to providing these important services and research. Much of our work is done by volunteers, working in their homes. This keeps our costs low, and ensures your money goes directly to support people living with TSC. Your support, however big or small, is greatly appreciated.

Kalymnian Club raised $4,600 for TSA at their annual Car and Bike Show on Sunday 31 March, 2019.
Movie night fundraiser organised by Cynara and Matt in WA
John and Barry at the annual Christmas in July fundraiser at Padstow RSL


TSA can create a #Heroes4TSC poster in honour of the person with TSC you are fundraising in honour of to help inspire support from your community