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For some patients, epileptic seizures have been reduced by an astonishing 90%, significantly improving their ability to carry out everyday activities while restoring their confidence and quality of life

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An antisense oligonucleotide (ASO) drug is still undergoing clinical trials and is awaiting approval from the U.S. Food and Drug Administration (FDA). Even so, it has already generated considerable optimism and hope among people living with epilepsy.

ASO works cumulatively, and its developers stress that it is not a universal cure for epilepsy. Nevertheless, patients who have received the treatment describe its effects as remarkable. The drug is administered directly into the spinal canal, and as its effects gradually diminish between doses, some symptoms may temporarily return.

What is particularly encouraging is that, in some patients, epileptic seizures have been reduced by as much as 90%. Many have become far more capable of managing everyday tasks and have regained confidence and a renewed sense of purpose.

One such patient is 17-year-old American Connor Dalby, who was previously unable to walk. After receiving the experimental treatment, he gained the ability to run. However, he continues to live with a severe form of autism spectrum disorder and developmental and epileptic encephalopathy, a rare type of epilepsy.

Connor is still unable to speak independently and, although he can now stand and move around on his own, he often requires guidance from his caregivers. He continues to need full-time care, but his condition has improved dramatically compared with before he began receiving the treatment.

Connor is among a small number of patients granted access to the experimental therapy through an FDA-authorised expanded access programme while the drug remains in clinical testing.

In simple terms, the experimental treatment reduces the activity of the mutated gene responsible for causing epilepsy while preserving the function of the healthy copy of the gene. Researchers believe that this ability to suppress the harmful genetic signal while maintaining the beneficial one could potentially be applied to patients with a wide range of disease-causing mutations.

Identifying these mutations shortly after birth and beginning treatment as early as possible may help children avoid developmental impairments caused by persistent epileptic seizures.

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Specialised autism training received by an emergency dispatcher played a crucial role in locating a three-year-old boy with autism who wandered away from his home in the U.S. state of Ohio. The case highlights how understanding the characteristics of autism can be vital during searches for missing children

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When the boy’s mother reported her three-year-old son missing, emergency dispatcher Rebecca Elias immediately recognised that the situation required a different approach from the standard protocol.

Thanks to the training she had previously completed, Elias asked several questions that would not normally be included in a routine emergency call. In particular, she wanted to know whether there were any swimming pools, lakes or other bodies of water near the family’s home.

Police officers and rescue teams were immediately directed to a nearby swimming pool, where the boy was found alive and safely rescued.

Rebecca Elias completed a training programme provided by the National Center for Missing & Exploited Children (NCMEC). The programme is designed for emergency dispatchers, law enforcement officers and other first responders to help them better understand the behaviour of people on the autism spectrum during emergency situations.

According to NCMEC guidance, children with autism who wander away often do not respond when called by name, may avoid contact with rescuers, or may be drawn to specific places or objects. The organisation also warns that bodies of water present one of the greatest dangers during such incidents, as drowning is the leading cause of death among children with autism who wander.

For this reason, emergency responder training focuses on recognising behavioural patterns commonly associated with autism and adapting search strategies to the specific needs of individuals on the autism spectrum.

Following the successful rescue, Rebecca Elias said that the training enabled her to ask the right questions immediately and direct the search in a way that ultimately led to a positive outcome.

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A faster and simpler compensation process for flight disruptions, guaranteed adjacent seating for parents and children, and hand luggage included in the ticket price are among the new rules approved by the European Parliament

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On Tuesday, Members of the European Parliament adopted the revised air passenger rights rules by 646 votes to 12, with three abstentions, following an agreement reached with the Council through the Conciliation Committee. The legislation updates the passenger rights framework that has been in force since 2004 and aims to ensure appropriate protection for travellers in cases of disruption, such as denied boarding, flight delays and cancellations.

“We have good news for everyone who flies. We worked hard to ensure that passengers do not lose the rights they already have, while at the same time providing stronger protection for families, people with reduced mobility and others who need it most,” said Virginijus Sinkevičius, Vice-Chair of the European Parliament’s Committee on Transport and Tourism and a member of the Greens/EFA group from Lithuania.

Preserving Existing Rights

MEPs successfully safeguarded passengers’ key right to compensation or rerouting when a flight is cancelled. Travellers will also continue to be entitled to compensation for delays exceeding three hours, cancellations occurring within 14 days of departure, and denied boarding.

Compensation levels remain unchanged and continue to depend on flight distance: €250 for journeys of up to 1,500 kilometres, €400 for flights within the EU exceeding 1,500 kilometres and for other flights between 1,500 and 3,500 kilometres, and €600 for longer journeys. Airlines will be allowed to reduce compensation by 50% on the longest routes if they offer rerouting to the final destination following the disruption or if the arrival delay does not exceed four hours.

Airlines will also be exempt from paying compensation when delays or cancellations result from extraordinary circumstances beyond their control. The revised rules include a non-exhaustive list of such circumstances, including natural disasters, war, severe weather, disruptive passenger behaviour, and strikes involving airport service providers, air navigation services or ground handling companies.

Regardless of the cause of the disruption, airlines will remain obliged to assist passengers while they wait. This includes refreshments every two hours, a meal after three hours, and, in the case of longer delays caused by circumstances beyond the airline’s control, accommodation for up to three nights.

Faster and Simpler Compensation Claims

MEPs insisted that the compensation process should become faster and more straightforward. Passengers who choose financial compensation instead of rerouting will receive it automatically. Travellers affected by disruptions will also receive clear instructions on how to submit a compensation claim within four days of completing their journey.

In addition, passengers will not be required to create an online account or download a dedicated mobile application in order to receive this information.

Passengers will have nine months to submit a compensation claim, while airlines will have 30 days either to pay compensation or explain why extraordinary circumstances apply and inform passengers of the complaints procedure.

New Passenger Rights

Passengers travelling on return tickets will be able to use the return leg even if they did not use the outbound flight, without incurring additional charges.

The new rules also establish the right to bring a personal item, such as a small bag or backpack, on board free of charge. To improve price transparency and comparability, airlines, ticket intermediaries and flight comparison websites will be required to display fares that include cabin baggage at the beginning of the booking process. Airlines may still offer lower fares to passengers who choose to travel without cabin baggage.

Passengers will no longer be charged for correcting spelling mistakes in their names or for using a boarding pass they have printed themselves after checking in.

MEPs also secured passengers’ right to receive a digital boarding pass automatically after check-in, without having to submit an additional request or create an online account or use a dedicated application. Furthermore, passengers may not be denied boarding for presenting their own printed copy of a digitally issued boarding pass.

Better Protection for Vulnerable Passengers

The revised rules strengthen protections for passengers with disabilities and passengers with reduced mobility. They will be entitled to compensation, rerouting and assistance if they miss a flight because airport service providers failed to ensure their timely arrival at the boarding gate.

The legislation also ensures that families travelling with children will not be separated during flights. Airlines will be required to seat an accompanying adult next to a child under the age of 14 at no additional cost. The same right will apply to passengers with disabilities, passengers with reduced mobility and pregnant women.

“Today’s vote is a victory for both passengers and European aviation. After more than 13 years of deadlock, we are finally replacing uncertainty with clear rules, stronger rights and greater confidence. Passenger rights take off with travellers—they do not remain grounded,” said rapporteur Andrey Novakov (EPP, Bulgaria).

Source: European Parliament Liaison Office in Croatia