Get involved
Children with SPG4 need research to move forward — and research needs money, but it also needs people: someone who translates an article for parents, organises a charity run or opens the door to a laboratory. Choose what suits you.
AI-generated illustrative image. It does not depict real people, patients or partners.
Volunteering
People with very different skills and amounts of time help us. We suggest activities that fit your availability, from home or at events.
- Translating and checking texts about SPG4
- Organising events and fundraisers
- Communications, design and video
- IT support for the website and internal tools
Before you start, we discuss the role together and agree in writing what it involves.
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Ambassador programme
Ambassadors take accurate information about SPG4 and the association where we cannot reach: their town, their workplace or their online communities.
What an ambassador does
- Shares the verified information published by the association and refers medical questions to specialists.
- Represents the association locally or online, with our agreement for each public activity.
- Follows the association’s communication guidelines: no promises about treatments, no personal data about patients and no fundraising in their own name.
You receive up-to-date materials from us and support with difficult questions.
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Fundraise for research
You can turn a personal milestone or a challenge into a campaign for SPG4 research.
A birthday
Ask friends for a donation to research instead of presents.
A sports challenge
Run, swim or cycle a distance you set yourself, and ask your supporters to donate.
A school or company event
A fair, a concert or a themed day, with donations directed to the association.
The one rule
Money goes directly to the association’s official accounts or through the payment options on the donate page — never to personal accounts. That way every amount can be verified and reported.
Write to us before you launch: we will send you materials and the correct payment details.
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Corporate partnerships
If you represent a company, you can support research through a sponsorship contract, employee programmes or pro bono expertise.
Research collaboration
We welcome contact with researchers, clinicians and institutions working on SPG4, other hereditary spastic paraplegias, or technologies relevant to gene therapy.
- Project proposals, which can enter our independent scientific review process
- Exchanging information on studies, research models and patients’ needs
- Connecting with families interested in research, in line with research ethics and data protection
Receiving a proposal does not mean a funding commitment. Every decision follows independent review and board approval.
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From abroad
You can help from anywhere: donate, organise a fundraiser where you live, or connect us with researchers and patient organisations in your country.
The donate page has the details for international bank transfers in EUR and for card payments.
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Redirect 3.5% of your income tax
If you earn a salary in Romania, you can direct up to 3.5% of your annual income tax to a nonprofit organisation. It costs you nothing extra: the amount comes from tax you owe anyway.
- Who can
- People with salary income. From 2024 income onwards, the option no longer applies to pensions, self-employment or rental income.
- Form
- Form 230 — the request on the destination of up to 3.5% of the annual income tax due.
- Deadline
- 25 May each year, for the previous year’s income.
- Duration
- You can choose the same beneficiary for up to two years, renewable.
The association’s status in ANAF’s register of eligible entities (RUC): to be confirmed
ANAF only pays organisations that are in the RUC on the payment date. Redirecting to the association will be possible once it is registered; we will announce it here and in our newsletter.
Information checked on 6 November 2026.