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“June 21 is the International MND Day and on this occasion we decided to organize a conference in Iceland in cooperation with the international movement,” said Gísli Jónasson, treasurer and former provost of the Icelandic MND Association, in an interview with mbl.is at the Women in Science and Sensitive Communications conference, or Women in Science and Sensitive Communicationwill take place on Friday, June 21 at the Hilton Reykjavik Nordica.
Gísli has previously spoken to mbl.is about the issues facing MND patients in Iceland, including their efforts to get the drug Tofersen approved and licensed for use by patients with this fatal motor neurone disease (known in Iceland as motor neurone degeneration).
MND is also known as Lou Gehrig’s disease, but patients with MND become progressively paralyzed, first in their limbs, then in their mouth and throat, and further inward until they are completely paralyzed. The life expectancy from the onset of illness is two to five years, but there are some exceptions, according to the MND Association website.
Almost all speakers were women
People with MND have about a 50% chance of passing the disease on to their children, something Keighley had to experience first-hand as he has a daughter with MND.
“The conference was a great recognition of the role of women in science, with all but two of the speakers being women,” Keighley said with a smile. But it was clear that the infamous bout with polio had taken its toll on the former provost.
“The president of the council will be Eva Þengilsdóttir, executive director of the Icelandic Federation of People with Disabilities, so that will be the best outcome. However, people have to register and we have space for 150 people,” Gísli says, before taking a break, clearly reluctant to speak for long right away after MND tightened its grip on his nervous system.
Importance of genetic engineering
“At the conference we will be discussing certain topics, including a presentation on the latest drug testing, which I am personally excited about,” says Gisli, who also has high hopes for Dr. Karen Eva Halldórsdottir. “She will be talking about something that we take very seriously at the MND Association, even though we are deaf to it, and that is the importance of genetic engineering, that is, offering genetic testing to all MND patients to see if they carry any of the genes known to cause motor neurone disease, which there are too many to count.” Gisli says, emphasizing his voice as much as possible.
“Of course, there’s more research going on about other genes, and it’s known that a certain percentage of people with so-called ‘sporadic’ or random MND who don’t have a family history carry one of these genes, and somewhere along the way it starts to get mutated somewhere. There are now drugs, so-called brake drugs like Tofersen, that can slow the progression of the disease, so it’s particularly important for people who have the gene fault and start to have symptoms to get treated with drugs straight away,” continued Gisley.
Tofersen’s research shows that the earlier people with MND are diagnosed, the better off they are at getting off medication. On the other hand, in Iceland, there has been an uproar between MND patients and the health system over the usefulness of Tofersen, which Gísli says has cost many patients months or even years of their precious time battling these issues. The Swedish Medicines Agency formally approved the drug’s use exemption in mid-March last year.
Invited to the cinema
According to a press release from the MND Association, former First Lady Eliza Reid and newly elected President Halla Thomasdottir will address the video conference. The speakers at the conference are experts in MND, as evidenced by their professional or personal experience. They explore the most important issues related to MND in today’s world, both academically and humanistically.
“At the end of the conference, we invite you to the cinema, where the Icelandic premiere of the animated short will take place. LUKi and lightswhich has been widely praised abroad. The short film vividly explains the impact of MND. After the screening, there will be a Q&A with relatives who watched the film.”
Registration is open until Thursday, June 20, as space permits.
Readers can register for the conference here.
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