As the saying goes, if it sounds too good to be true, it probably is – undoubtedly sound advice in the vast majority of contexts.

But once in a while, being a little wide-eyed and choosing to believe that a stranger really is prepared to offer an unexpected and particularly generous helping hand, can actually be a good idea.

A good example of this is Professor Ida Vogel, who has prenatal diagnosis and rare diseases as one of her research areas.

It all started when she received a mysterious request from abroad in the autumn of 2021.

"At the time, I was on sick leave with a form of Lyme disease, so my email was set to out of office. But I still noticed an email from a law firm in London, where the sender wrote that he had read my research on the rare Pallister–Killian syndrome, and that he was interested in sponsoring my research if needed," explains Ida Vogel.

Seemed genuine?

However, her first thought was that nothing is really free – and certainly not for researchers, who often have to spend a great deal of time and resources on applying to foundations for funding for research projects.

So Ida Vogel decided to let the email remain unanswered in her inbox and continue her sick leave.

But there was something about the email that seemed particularly genuine and serious, so she could not completely get it out of her head.

"The email was sent from a large law firm in London, and when I looked more closely, it seemed very genuine. But on the other hand, I thought it was one of those emails where I’d suddenly be asked to pay a large amount of money," she says.

Grandfather of a girl with a rare syndrome

Because she was in doubt, and because she was on sick leave, it took about a fortnight before Ida Vogel finally decided to investigate the matter further. What she found particularly strange was that the sender was specifically interested in Pallister-Killian syndrome, which is a very rare disease.

She therefore replied, and in turn received a reply from the sender within a few hours, and before long an online meeting was set-up.

"The sender turned out to be a gentleman who had invited his daughter and grandchild, who had Pallister-Killian syndrome, to the meeting," says Ida Vogel.

It quickly became clear that the man’s intentions were genuine. He explained how difficult it was to live with a close family member who had a rare disease about which there was only scarce knowledge.

And that he wanted to do what he could to help the progress of the research into the disease that his grandchild was suffering from.

He also explained how he had come across Ida Vogel's name while searching the internet for information about his grandchild’s disease.

Found Ida Vogel’s research on the internet

After having a little girl with the syndrome as a patient, Ida Vogel had written a brief description of a case with an earlier patient for a journal – known as a casuistry in medicine – after which a foreign patient association encouraged her to write some patient information about her experience with the syndrome.

It was this patient information that led the man to Ida Vogel’s research.

At the Zoom meeting, Ida Vogel made it clear that her research would not make a difference in the case of the man's grandchild.

Her research is more concerned with how a whole group of rare diseases occur due to errors in cell divisions that take place in the foetus and in the placenta shortly after fertilisation, so-called mosaicism.

"I made it clear that our project wouldn’t specifically help his grandchild, but would instead examine some underlying causes behind why syndromes such as Pallister-Killian occur," she explains.

Humbled by a private donation

She also made it clear that he would not have any influence on the research, even though he was investing a large amount of money in the project.

None of this seemed to deter the man. And after a series of meetings, they signed an agreement for him to sponsor Ida Vogel’s research project to the tune of a million Danish kroner.

"We’ve negotiated on the exact amount, and as I’m not a very good at haggling, someone else could’ve maybe been smarter, but as the money is coming directly from his own pocket, it’s really an absurdly large amount."

"As a public employee who is used to applying for funding from major foundations, I feel very humble to see him spend a million kroner of his own money to support our work," says Ida Vogel.

Will make a big difference

The money is earmarked for a PhD programme for a newly qualified medical doctor who has been affiliated with Ida Vogel’s research team while still a student. Over the next three years of his PhD programme, he will be collecting material that can shed light on how errors in cell divisions in the foetus can lead to rare chromosomal diseases.

The private donation will make a significant difference and enable the research team to avoid all the work involved in applying for funding via more conventional routes.

Applying for funding for research into rare diseases can be a major challenge, as the patient groups involved are extremely small, which makes investment less attractive.

"It's fantastic to know already now that we can begin in July, so I've already begun collecting the samples and organising the practical aspects. So we can hit the ground running and get to work straightaway," says Ida Vogel.

Gained each other’s trust

Due to the coronavirus pandemic and other factors, all meetings with the generous Englishman took place over Zoom.

"We quickly established a good relationship, as is often the case when you meet patients and relatives. Typically, you only need a few minutes before gaining a high degree of trust in each other. It’s exactly the same feeling here."

This trust between the researcher and the man and his family will also have a positive influence on the research project.

"It's a huge motivational factor. We can now visualise this man and his desire to generate more knowledge for his grandchild, and this makes the project even more meaningful to us," says Ida Vogel.

Today, she is pleased that she allowed the benefit of doubt to fall in the man’s favour and decided to answer his email.

Can we learn anything from this?

"The first piece of good advice is, of course, to answer your emails."

"The next could be that as a researcher you ought to look more closely at your research communication from the patient’s viewpoint. In this way, patients and relatives will at least have an opportunity to read and understand the research and, with this in mind, assess whether they can contribute to supporting the research in one way or another."

"So I’d encourage others to write the patient information, and the casuistry that they’re meaning to get around to, or to arrange a meeting with the patient association. Maybe it’ll end up benefiting you, and if you want to enjoy a bit of luck, then you’ve got to be proactive.”

Contact

Clinical professor, Ida Vogel
Aarhus University, Institut for Klinisk Medicin
Phone: 31523156
Mail: iv@clin.au.dk