Support Our Son and EEF1A2 Research
What the money is for, and four things we think you should know before giving.
What the money is for
Three things, named plainly. We would rather you knew exactly what you were contributing to than be moved by a story.
If the list above has not loaded: the three purposes are our son's therapeutic and developmental support; further investigation of the EEF1A2 D91N variant; and a contribution to laboratory experiments if and when a collaboration with a qualified laboratory is established.
Four things you should know before donating
- Donations go through a private GoFundMe campaign run by our family. Not through a registered charity, a foundation or an institution.
- Contributions are not tax-deductible, and we cannot issue a donation receipt for tax purposes. Any claim to the contrary would be false.
- No arrangement exists to transfer donations to a university or research institution. If that ever changes, it will be stated here explicitly, with the institution named and with its permission.
- Part of the money supports our son directly — therapies and developmental support — not only research. We mention it first rather than in the small print, because a donor deciding between a research charity and this campaign should know that this is not a pure research fund.
If a strict research donation is what you want, a disease-focused research charity or a university foundation will serve you better than we can, and we would rather say so than take a donation under a misunderstanding.
Funding progress
Figures here are read from the campaign page and entered by hand, with the date they were read. Nothing on this page is fetched live or estimated, and no total, goal or donor count is ever rounded upward or projected. The campaign page itself is always the authoritative figure.
The link opens gofund.me, which is operated by GoFundMe and not by us. Their privacy policy and fees apply, and any payment data is handled entirely by them — we never see it.
Other ways to help, several of them worth more than money
- Put us in front of the right laboratory. One introduction to a group working on translation elongation would do more for this project than most donations. What we are asking for.
- Correct the science here. If you spot an error, tell us. Accuracy is the only asset this site has.
- Share the knowledge platform rather than the campaign. The EEF1A2 pages and the variant database are written for newly diagnosed families and for clinicians who have just met this gene for the first time. They are the part of this site most likely to be useful to someone else.
- If you work in rare disease and know a grant programme or foundation whose scope genuinely fits an ultra-rare single-variant question, we would welcome the pointer.
Our commitments
- We will not fabricate donation totals, funding commitments or institutional partnerships, and we will not describe a hoped-for collaboration as an existing one.
- We will not claim therapeutic efficacy for anything, and we will not use a treatment claim to raise money. Everything on the hypotheses page is labelled by evidence strength, including the parts where our search found nothing.
- If the research produces a null result, we will publish it on the updates page with the same prominence as a positive one.
- Scientific accuracy, transparency and our son's privacy take priority over fundraising. Where they conflict, fundraising loses.
This website does not provide medical advice and nothing on it is a treatment recommendation. See the full disclaimer.