Create a Legacy Fund
Honour a Life. Share a Story. Create a Lasting Legacy of Hope.
Every life has a story worth remembering.
At National MSA Research, we recognise the importance of celebrating the lives of people who have touched our hearts, inspired our communities and made a difference to those around them.
A Legacy Fund provides a meaningful opportunity to honour someone special while raising awareness of Multiple System Atrophy (MSA) and supporting our charitable mission.
Whether you are remembering a loved one, celebrating someone living with MSA or wishing to create a lasting tribute, we welcome the opportunity to discuss establishing a Legacy Fund.
What Is a Legacy Fund?
A National MSA Research Legacy Fund is a dedicated charitable fundraising initiative associated with an individual or an approved tribute.
It provides a central place where family members, friends and supporters can learn about someone special, share in their story and make charitable contributions in their honour.
A Legacy Fund can continue to receive donations over time, allowing supporters to contribute on meaningful occasions such as birthdays, anniversaries or other commemorative dates.
Legacy Funds operate as part of National MSA Research. They are not separate charities or personal accounts.
Funds raised contribute towards the charitable purposes of National MSA Research, subject to applicable restrictions and approved fund arrangements.
Why Create a Legacy Fund?
Creating a Legacy Fund can provide a meaningful way to celebrate someone’s life while contributing towards a cause that matters.
It may help families and supporters:
- Honour the memory of a loved one.
- Celebrate a person living with Multiple System Atrophy.
- Share a personal story with the wider community.
- Raise awareness of MSA and its impact.
- Invite family members and friends to contribute to a charitable cause.
- Mark important anniversaries or special occasions.
- Establish an ongoing tribute connected to the mission of National MSA Research.
Every fund is unique because every person’s story is different.
A Personal Tribute Page
Approved Legacy Funds may have a dedicated page on the National MSA Research website.
This page can introduce the person being honoured and explain why their story is meaningful to the people who love them.
Depending on the family’s wishes and publication permissions, a Legacy Fund page may include:
- The person’s name.
- A photograph.
- Their year of birth and, where appropriate, year of passing.
- A personal biography or tribute.
- Information about their connection to Multiple System Atrophy.
- A message from family or friends.
- A fundraising goal, where applicable.
- Approved fundraising progress information.
- An option for supporters to make a donation.
Families will have the opportunity to review proposed personal content before publication.
We recognise that some people prefer to share only limited information, and we respect those preferences.
How to Establish a Legacy Fund
Step 1 — Contact National MSA Research
Begin by contacting our organisation to express your interest in establishing a Legacy Fund.
Tell us a little about the person you would like to honour and the type of tribute you have in mind.
Step 2 — Discuss Your Legacy Fund
We will consider your request and discuss the proposed fund, including its purpose, fundraising arrangements and any relevant conditions.
This is also an opportunity to ask questions about how donations are received and managed.
Step 3 — Prepare Your Tribute
If your fund is approved, you may be invited to provide photographs, a biography and other information for the dedicated page.
We encourage families to share the details that best reflect the individual being honoured.
Step 4 — Review and Approval
Before publication, the proposed tribute and fundraising arrangements will be reviewed.
All Legacy Funds are subject to National MSA Research’s approval and relevant charitable, privacy and administrative requirements.
Step 5 — Share Your Legacy Fund
Once approved and published, your Legacy Fund page can be shared with family, friends and others who wish to support the tribute.
Supporters may contribute through the available donation options.
Supporting Your Legacy Fund
A Legacy Fund may receive contributions through individual donations, recurring giving or approved fundraising activities.
Some families choose to invite donations to mark birthdays, anniversaries or memorial occasions.
Others prefer to organise community fundraising activities in support of their fund.
Any fundraising activity conducted on behalf of National MSA Research may require prior approval and must comply with applicable fundraising requirements.
How Donations Are Managed
Donations made to an approved Legacy Fund are received by National MSA Research.
Where a donation is correctly designated to a particular fund, the organisation aims to record that allocation in its financial records.
The use of funds is governed by National MSA Research’s charitable objectives, the applicable fund arrangements and any legally binding donor restrictions.
Funds are not distributed to the family or individual being honoured.
Where appropriate, verified fundraising totals and progress towards an approved goal may be displayed on the Legacy Fund page.
Any research funding commitment will require separate organisational approval.
Fundraising Goals and Progress
Some Legacy Funds may establish a fundraising goal.
A goal can provide a focus for family members, friends and supporters who wish to contribute over time.
Fundraising progress may be updated as donations are verified and recorded.
A fundraising goal does not guarantee that a particular amount will be raised or committed to a specific research project.
National MSA Research aims to communicate fund information accurately and transparently.
Honouring Someone Living With MSA
Legacy Funds are not limited to remembering someone who has passed away.
They may also provide a way to recognise and celebrate someone living with Multiple System Atrophy.
With appropriate consent, a fund may share their experiences, celebrate important milestones and encourage community awareness.
We recognise that health information is sensitive and that each individual should have control over the personal details they choose to share, wherever possible.
Respecting Families and Personal Stories
We understand that establishing a Legacy Fund can be a deeply personal decision.
Families may wish to share photographs and memories, while others may prefer a simpler tribute.
National MSA Research aims to approach these requests with sensitivity and respect.
Personal information and photographs will be considered for publication only where appropriate consent or authority has been obtained.
If circumstances change, families may contact the organisation to discuss updates to the information displayed.
Tax-Deductible Donations
Rare Neurological Disease Research Ltd, trading as National MSA Research, is endorsed as a Deductible Gift Recipient (DGR).
Eligible donations of $2 or more may be tax deductible under Australian taxation law.
The eligibility of a contribution depends on the nature of the payment and applicable requirements.
Donation receipts will be issued where appropriate.
A Legacy That Makes a Difference
National MSA Research was founded in October 2024 following the loss of Adrian Klep to Multiple System Atrophy.
His experience inspired the determination to raise awareness of a condition that remains unfamiliar to many Australians.
Our Legacy Fund initiative reflects the belief that personal stories can inspire compassion, community connection and charitable support.
Each Legacy Fund represents someone special.
Browse our existing Legacy Funds and read their stories.
Together, those stories can help build greater understanding of MSA and encourage continued progress towards better treatments and a cure.
Enquire About Creating a Legacy Fund
Let us know you are interested in establishing a Legacy Fund and our team can discuss the next steps.
Submitting an enquiry does not establish or publish a fund. The form opens in a new tab.
If you would like to establish a Legacy Fund, we welcome your enquiry.
You do not need to have every detail prepared before contacting us.
Our team can explain the proposed process and discuss whether a Legacy Fund is appropriate for your circumstances.
Contact National MSA Research
Rare Neurological Disease Research Ltd
ABN: 55 681 229 032
Email: info@nationalmsaresearch.org.au
Website: www.nationalmsaresearch.org.au
Combatting MSA Together — Honouring Lives, Sharing Stories and Creating Hope.