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The Dutch MS Association’s volunteers hoist the sails

27.11.2023

The Netherlands has an estimated 34,000 people with MS. The Dutch MS Association is the only association in the Netherlands that represents the interests of people with MS and Neuromyelitis Optica Spectrum Disorder and their loved ones.

Core tasks

The Association has three regular core tasks, namely: advocacy, provision of information and peer contact. Advocacy is the exercise of influence, including in areas of policy, care provision and research choices. The Dutch MS Association does this based on the experiential expertise of people with MS and focuses on various areas, such as: health care, social support, work and income, benefits, training. Our association has opted for MS-specific advocacy. For non-MS-specific advocacy, the Dutch MS Association is affiliated with the Dutch Patient Federation and  Ieder(In), a network for people with a disability or a chronic illness.

Our association provides information about the disease and life with MS so that people can make choices to maintain control over their own lives. We organise meetings in the region with an educational, informative and social character.

Regional and national working groups

The Dutch MS Association is always close by. We have divided the Netherlands into 19 regions in which as many regional working groups of volunteers are active. We bring people with MS and those close to them together to share knowledge and experiences.

In addition to regional working groups, our association also has national working groups. They are mainly active in providing information. Two of them are teams of the MS Telephone and the MS Information. Providing information is often combined with the aspect of peer contact.

The teams of MS Telephone and MS Information

The MS Telephone is a telephone assistance service of the Dutch MS Association. Anyone can call the MS Telephone on working days between 10:30 am and 2:00 pm for questions about living with MS, advice or a listening ear. The MS Telephone team consists of experienced volunteers who are professionally trained for work on the telephone. The team records what is going on in people with MS. When many people call about the same subject, the team brings this to the attention of the board of the MS Association Netherlands.

The MS Telephone team receives between 600 and 900 calls annually. Two-thirds of which are women. Two-thirds of callers have MS themselves. Partners of MS patients and also people who suspect that they have MS call regularly. They have all kinds of questions. They are looking for a listening ear and want to talk about ‘life with MS’  and have questions about diagnosis and vaccinations.

The MS information team provides 20-25 information sessions per year. They also answer requests from master students and high school students. Almost half of the requests for information come from training courses, almost a quarter from healthcare institutions or healthcare companies. In almost two-thirds of the information sessions, the advisors used the MS Experience Toolkit. A toolkit with all kinds of attributes that can simulate symptoms of MS.

Mutual encouragement

As a token of appreciation for the volunteers of the MS Telephone and the MS Information and to allow both teams to get to know each other better, the MS Association Netherlands office has organised a sailing week for them. At the beginning of October, our volunteers from the MS Telephone team and the MS Information team left for Loosdrecht, a town next to the Loosdrecht Lakes, for a midweek of groundbreaking water sports activities. This midweek was offered by ilionx, a Dutch IT company with a social mission. The midweek was a token of appreciation for the good services that these volunteers provide on behalf of our association. But also an opportunity to exchange their experiences as volunteers for our association.

Sailwise

The fifteen volunteers were picked up from the quay by boat by Sailwise employees and waved goodbye by family. Under the guidance of a lovely sun we left for the water sports island Robinson Crusoe. The first boats sailed the same afternoon. A wonderful start to what would be a week with good conversations, mutual encouragement, good food, but above all enjoying a great adventure together.

The Sailwise volunteers ensured that everyone got into the boats with confidence. There was sailing, canoeing, surfing, swimming and even water skiing. Boundaries were tested and often pushed. In addition to muscle pain in the legs, these days also resulted in muscle pain in the jaws from laughing.

Smores by Francis

At the location, the two hostesses, Anja and Petra, ensured everything ran smoothly and two employees from the national office of the Dutch MS Association, Rowan and Annette, took care of the inside. In the evening the games were put on the table or a campfire was made with delicious ‘smores’ from Francis and of course the necessary jokes and stories.

Both teams look back on a wonderful midweek in which they had the time to get to know each other better, work together and enjoy themselves.

A big thank you to ilionx, who not only provided the financial resources, but also delicious pancakes. We hope we can embark on this sailing adventure together again next year.