LMNAcardiac.org: connecting the international field to find a cure for LMNA cardiac disease

LMNAcardiac.org is a new network for experts and patients focussed on LMNA cardiac diseases, with the aim of accelerating research and development to find effective treatments. The disease is caused by mutations in the LMNA gene, and is characterized by a high rate of major cardiac events caused by impaired contraction of the heart. Catalyze completed a Market Research Report for Stefan Bassant, co-founder of LMNAcardiac.org, with insights into LMNA-related cardiac disease. We spoke with Stefan to find out more about the purpose of the provided market research, how he subsequently came to establish LMNAcardiac.org, and his mission with the newly founded network for LMNA cardiac disease.

Finding a new mission to further LMNA-related cardiac disease research

During a new entrepreneurial venture, and before founding LMNAcardiac.org, Stefan Bassant – a patient of LMNA-related cardiac disease – unexpectedly found himself in a position to make a significant impact in the field.

Stefan introduces himself, “I’m an entrepreneur coming from a family background in real estate. Over 20 years I founded and ran an online real estate investment platform, which I sold in 2018. Quite soon after, I was itching again for something similar, but new. I started an open venture capital platform where I connect entrepreneurs with investors or the other way around.”

Through his new business venture Stefan was connected to a biomedical company developing 3D cardiac models in early 2021.

Stefan remarks on the personal significance of this, “In my family, we have an LMNA gene mutation and to hear about 3D cardiac models is of course interesting. I started thinking about if this was an area I could help. After talking about this with the company, River Biomedics, we agreed it’s best I had a clear starting point, which is how I got introduced to Catalyze.”

Market Report for insights into LMNA-related cardiac disease

The report provided Stefan with a practical starting point, including clear insights of the LMNA field, lists of experts and key opinion leaders (KOL), and what the therapeutic possibilities are now and in the near future. Stefan describes how this enabled him to quickly make progress:

“Having the report from Catalyze, and with this comprehensive background on LMNA-related cardiac disease, was very, very helpful for getting in contact with the real experts within this field. They could see that I was serious about helping.

“The list of experts, KOLs and companies also made a great starting point. Once I started talking with one expert, they mention others, and so you contact with more and more people. Eventually I contacted all the experts in the Netherlands – and internationally as well.”

Stefan’s initiative was warmly welcomed by those working in the field.

“The reaction from the experts that I contacted was only positive. They were very happy that someone else was taking an initiative to find ways to support the field.”

Discovering an opportunity to support new collaborations in the field

After talking to a number of experts in the field, it became clear to Stefan that there was a way he could help.

As he mentions, “Once I started talking to them I discovered that, although there are quite some experts and companies working towards an effective treatment, they only know each other by name.

“There was no network in the field, so no clear way for experts and patients to find each other – and limited information on LMNA online.”

Founding LMNAcardiac.org to connect the field

It became clear to Stefan that there was a real need to bring together the international network focussed on LMNA-related cardiac disease. This ultimately led him to co-found LMNAcardiac.org, together with Rogier Veltrop of Maastricht University.

Stefan explains, “I kept hearing from experts in the field that it would be of great value to set-up a foundation and build a network. Through a contact on the KOL list I was connected with Rogier Veltrop and together we founded LMNA-Cardiac. Rogier, who is also a patient, has dedicated his life to solving this problem.

“While we both carry an LMNA mutation, his professional background is completely different to mine. I’m an entrepreneur and he’s a biologist working in the lab. So it’s very cool to do the foundation together, where we can share our different expertise.”

Now, they are guiding LMNACardiac.org towards the ultimate goal of developing effective treatments for patients of LMNA-related cardiac disease.

“With LMNAcardiac.org we’re building a network and bridge between experts and companies, and also between the patients. I’m quite sure that we have perhaps even 90% of the experts in our network. The next step right now is to contact as many patients as possible worldwide.”

Expanding the LMNAcardiac.org network

Despite being less than one year old, LMNACardiac.org has made fast progress in establishing itself. On December 1st 2021 they hosted their first event; an online information meeting.

Recalling the success of the event, Stefan enthuses, “It was a big success with over 100 people in attendance – a combination of about 60% patients and 40% experts working in field in the Netherlands.”

After the event was attending by so many, the LMNACardiac network received a significant boost. Stefan says, “Following the event we had patients who joined from Brazil, Canada, US, Australia, Italy, France etc. It’s encouraging that they are able to find us, and it’s something that accelerates itself, because the LMNA mutation is quite often carried by entire families.”

Stefan continues, “We saw that in the information meeting where a whole family was attending – eight people sitting next to eachother looking at the screen.”

Following up on the successful meeting, Stefan has taken further steps to establish a comprehensive network in the Netherlands:

“In the Netherlands, we’ve now been in contact with a lot of the hospitals, with the aim of getting in contact with all of the patients and the carers as well. This is something we are trying to do internationally as well. The LMNA gene mutation carriers are all there, somewhere, they are just difficult to find.”

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