Moving Forward does “De Ronde”

– Written by the Moving Forward Team on July 16th 2022

Photo 1. Filipa and Bea

“De Ronde” is one of the names of the “Tour the Flanders”, a road cycling race held in Flanders – Belgium every year.

Earlier this month, Filipa Júlio, from the Moving Forward team, was invited by Bea De Schepper, Vice-President of the Huntington Liga, the Flemish HD Association, to visit the beautiful region of Flanders in Belgium and meet the different stakeholders and key organizations of the Flemish HD community (Photo 1).

Filipa was warmly welcomed at the lovely house of Bea, situated in Moerbeke (Waas), which is also the registered office of the Huntington Liga and one of the headquarters of the European Huntington Association and of the European Federation of Neurological Associations (Photos 2 and 3). It was a busy week, with an exciting agenda kindly put together by Bea, who was not only the best host but also the skilled driver of the Moving Forward representative.

Photo 2.

Photo 3.

“De Ronde” started in the outskirts of Ghent, to meet the President of the Huntington Liga, André Willems (Photo 4). It was a nice meeting at André’s office, where Filipa had the chance to listen to the history of the Huntington Liga and learn about their mission, goals, past and current work. This is the oldest HD Association in Europe (founded in 1974) and is one of the most well organized, resourceful, and respected HD organizations in the world. Filipa also presented the goals and actions of Moving Forward. The meeting ended with a discussion about potential synergies between Moving Forward and the Huntington Liga to help bring the younger generations of the Flemish HD families closer to the association.

After the meeting, André guided Filipa and Bea through the wonders of Ghent, a beautiful and ancient Flemish city, full of historical buildings and cultural references (Photo 5). The day ended with a very nice dinner in a quiet restaurant located in the bustling city centre.

Photo 4. André, Filipa and Bea

Photo 5.

On the morning of the second day, Filipa and Bea were warmly welcomed in Mariatroon by Johan Vermoesen and his team (Photo 6). This is a nursing home located in Dendermonde that has a lot of experience with HD patients.

Katrien and Chris showed Filipa and Bea the facilities, introduced them to some of the residents, and explained all the procedures and routines that the staff members daily put into place to accommodate the specific needs of people affected by HD. The adapted cutlery (thicker handles for easier handling) and the stabilizer collar (a collar with sand to reduce involuntary trunk movements during the meals) in the dining room are just a few examples of the cool resources available to HD patients (Photos 7 and 8).

Photo 6. Johan, Bea, Katrien, Chris and Filipa

Photo 7.

Photo 8.

Our visit ended with a tasty soup bowl in the cafeteria of Mariatroon. Afterwards, we travelled to Heist-Op-Den-Berg to visit the world-renowned Home Marjorie, the first residential project for people with Huntington’s Disease in Flanders (Photo 9). Home Marjorie was founded by the Huntington Liga and was named after Marjorie Guthrie, Woody Guthrie’s widow and one of the most influential persons in the history of HD associations and in the history of the Huntington Liga in particular.

This organization wants to be a home and not just a house for people with HD, as Bart Corthals, the friendly and talkative director, explained to Filipa (Photo 10).

Photo 9.

Photo 10. Filipa, Bea and Bart

During an interesting meeting, Filipa and Bea were guided through a slide presentation about the history, principles, and multidisciplinary work of Home Marjorie, while Filipa had the chance to present the Moving Forward goals and actions. Next, Filipa and Bea had the chance to visit the different wards and spaces of the institution, meet some of the residents, exchange ideas with staff members, get familiar with the Home Marjorie work philosophy and see HD-customized equipment, such as adapted smoking devices and a soft bathtub to avoid bruises (Photos 11 and 12).

Photo 11.

Photo 12.

Filipa left Mariatroon and Home Marjorie in a state of amazement. In such a challenging condition such as HD, it is wonderful and reassuring to know that there are places that take such good care of people in more advanced disease stages.

Photo 13. Charlotte, Lut, Ingrid, Bea and Filipa

Photo 14.

The morning of the last day of the Flemish tour was devoted to meet the professional team behind the great information and support work of the Huntington Liga. Therefore, Filipa and Bea set off again through the chaotic Flemish traffic to visit the Huntington Liga social headquarters in Bierbeek, located in the peaceful and cinematic setting of the Psychiatric Center of St. Kamillus (Photos 13 and 14).

Filipa had the chance to meet Charlotte, Lut, Ingrid and Kelly, members of the very skilled and competent team which provides professional support to the Flemish HD community. They explained all the small and big details related to their work for the Huntington Liga, and some of the challenges they currently face. Filipa presented the main goals, features, and actions of the Moving Forward project and the group discussed potential ways to collaborate in the future to try to enhance the information and support provided to people at risk and people with premanifest HD in Flanders.

After a light and tasty lunch together (and an outdoor photo shooting), we headed to the main building of the Psychiatric Center of St. Kamillus, to meet Dirk Liessens, a renowned psychiatrist with an expertise in HD, and Albert Counet, the active President of the Ligue Huntington Francophone Belge (LHFB), who travelled from Liege to join us (Photo 15). Two weeks ago, Filipa also met Wim Vandenberghe via Zoom and had the chance to speak about the Flemish situation and the Moving Forward project with him.

Photo 15. Charlotte, Bea, Dirk, Albert and Filipa

Albert spoke about the past and current work of the LFHB and the group debated some potential joint actions between the LFHB, the Huntington Liga and Moving Forward to overcome the obstacles and challenges shared by the two Belgian organizations. Dirk spoke about the HD-related work done at St. Kamillus and the way the different Flemish organizations and professionals collaborate to provide support to the local families affected by HD.

Filipa presented the mission, goals, some of the actions and results of Moving Forward, and everyone was quite enthusiastic about the work already done and the possibility of establishing future collaborations. Filipa and Bea left St Kamillus with a “see you soon!”, as most of the group will attend the European Huntington’s Disease Network meeting in Bologna later in September.

After three intensive days, Filipa felt she has learned a lot about the past and current situation of the Flemish HD community, their rich history, excellent people, and abundant resources, but also about their needs, worries and wishes regarding the future. With all these positive experiences, back in Moerbeke, Filipa and Bea dived into the ultimate Flemish experience, the “Frituur” – Belgium fries and other tasty snacks at their best (Photo 16).

Heading home, Filipa felt she managed to accomplish her mission: to present Moving Forward to some of the local stakeholders and debate possible ways to collaborate in the future. In Belgium, the sky is the limit right now (Photo 17).