Short report: Meeting Weekend 2005 and 10 Year Anniversary Celebration

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At last, Friday, 9th September had arrived. We all made our way to the Floréal Club Hotel in Blankenberge to spend a relaxing and pleasant weekend. But also to celebrate the ALS League’s 10-year existence.

The board welcomed the participants “120 for 3 days” at the reception of the Floréal, starting at 2 p.m. Everybody was happy to be there. For most people, seeing old acquaintances again was an emotional moment. People started catching up and telling grand stories almost instantly. Assigning rooms became a minor detail, so this happened in a very cordial and relaxed atmosphere.

We saw many new faces this year. People who participated for the first time were immediately considered a part of the group and were able to forge new relationships. Even the two foreign couples (from the Netherlands and Germany) quickly found their way and were very happy about the warm reception.

Around 4 p.m., almost everybody had arrived and all the rooms had been assigned. Because of the big turn-out, the participants had to be distributed across three hotels. In doing so, mobility and care issues were taken into account. The least mobile patients, as well as those in need of more care, could stay at the Floréal hotel. Herman and Maddy were at the ready with professional help in caring for everyone as well as possible, and according to personal wishes. The rest of the patients stayed at Hotel Azaert. Board member Ginette accompanied the guests to the hotel and stayed with them as a point of contact. The third hotel, Paradiso, housed the ambassadors who chose to stay the night. Board member Paula stayed with them.

Around 6:30 p.m., people started to get hungry and we took some time out for a meal. Everyone had their meals at the Floréal, including the guests who stayed at the other hotels.

“In close company” (Friday)

Our next activity was awaiting us right after dinner. Every 10-year anniversary needs a celebration, so our ambassadors surprised us with an amazing evening of festivities. The foyer had been turned into a nice and cozy corner, where Mong Rosseel and his wife Magda and the Illustratie started the evening with a number of songs. His act was interspersed with sketches performed by Gerd De Ley (from the TV series Familie) and songs performed by David Davidse with his pianist Remco. We were all too happy to be able to order our drinks from our enchanting waitresses, Leah Thys and Marleen Merckx (both actresses in the TV series Thuis).

Gala night “A Colourful Evening” (Saturday)

We were invited to attend the big gala night at Floréal Club’s theater hall at 8:30 p.m. This was the official start to the festivities for the ALS League’s 10 year anniversary. Together with many hotel guests and locals, we welcomed several celebrities to our gathering. Our host for the evening, Marc Pinte, guided us through an evening filled with sweeping music.

Marc didn’t waste any time and introduced the pianist Remco. He would go on to accompany most of the singers. The first set was brought to us by Andrea Croonenberghs. We were pleasantly surprised that she had such a beautiful, warm singing voice on top of all her acting talent in series such as Flikken, Windkracht 10,... She performed three songs in English, with deep lyrics about relationships with not-so-happy endings.

Next in line was David Davidse. He remarked it was an honor to perform in such a beautiful venue, with such good acoustics. Just as we did on Friday evening, we enjoyed his beautiful baritone in one English song and two songs sung in dialect. These two songs were translations from the works of Porter.

After this, Marc Pinte announced a woman who has already been involved in many musical projects and who is still active in the music world: Linda Lepomme. One of her songs was “‘t Glipt me door de vingers”, a song from the Abba musical “Mamma Mia”.

Now it was time for a break for pianist Marco, who had accompanied all the acts so far. Our host Marc Pinte announced a mystery guest. He said it was someone who had participated in several projects over the summer and who would now be a member of the jury on X Factor. Liliane Saint-Pierre entered the stage. She launched into some lively music and the audience was instantly enthusiastic. Everyone was clapping their hands and singing along. Liliane mentioned that a singer is nothing without an audience and announced her second song, a song about LGBT themes and people. She wrote this song so that people would better understand and appreciate their struggles. She continued her set with a Dutch translation of “Simply the Best” and as an encore she performed her hit song “Sascha”.

Marc Pinte returned to invite us to an intermission with drinks in the foyer. Those of us who had trouble getting around could stay in the theater hall and have a drink there.

After the intermission, Leah Thys took the stage. She wanted to introduce a special guest, who came into the world in Tienen in 1958 and who has lived in Leuven since he was seven years old. he started his career at Radio Scorpio, the Leuven student radio station, with a show called “Bomma bakt ze bruin”. He then became a presenter at Radio Signaal, where he was discovered by Studio Brussels. Currently he presents a show called “Je remedie tegen de middagdip”, at Radio Donna between 1 and 4 p.m. This guest was none other than our presenter Marc Pinte. He will be the new ambassador of the ALS League, he was presented with “De Leeuw”.

And then there was ‘Cois’, from the soap series Thuis, also known as Stef Goossens. He did a nice skit about a plumber specializing in toilets. Among others, he was allowed to check Leah Thijs’ and Andrea Croonenberghs’ toilets. Apparently he also writes poetry, he created a special poem for the ALS League for the occasion. After reading to us his gripping poem, he announced his colleague from Thuis: Noureddine Farihi, better known to us as his character ‘Mo’. He played some Moroccan music together with two other musicians. Very different from our usual fare. Nevertheless, it was a beautiful piece of world music, that allowed us to discover the sound of the hajhouj (also called sentir or gembre), a string instrument, played by Mo.

After this performance, we were informed that a heavy storm was preventing actors Jacky Lafon and Eric Goris from making it to Blankenberge. Technicians were attempting to set up a telephone link that would allow these guests to speak to us over the phone.

While waiting for this remote connection, singer Amaryllis treated us to her beautiful song, “God in alle eenvoud”, a song she performed in the national selections for Eurosong 2004. She followed this with “Het Dorp”, by Wim Sonneveld, a song well-known in the Lowlands. She finished her set with a song about saying goodbye, encouraging us to remember the good things.

In the meantime, the technicians had established the connection to Jacky Lafon (‘Rita’ from the soap series Familie) and her colleague Eric Goris (‘Rob’ from the same series). Eric told us about the heavy weather raging over Antwerp and Boortmeerbeek, which was causing flooding and water damage. Jacky Lafon was very disappointed that she wasn’t able to celebrate with us that night. She gave heartfelt congratulations to everybody, especially her actor colleagues and the organizers of the gala night. We received lots of hugs and kisses from both of them. They promised to make a contribution to the League in the very near future. Our darling Marleen Merckx (‘Simonne’ from Thuis) had to leave us at that time as well, unfortunately.

Just like Friday night, we had another appointment with ‘vuile’ (dirty) Mong Rosseel, this time only a guitarist was accompanying him. Together they performed the latest version of “Het leven is een apenkot” and another song he wrote especially for the ALS League. The (Dutch) lyrics to this song can be found at, the recording will be uploaded later.

We were pulled out of our reveries when Marc Pinte announced that we were fast approaching the end of the program. Remco took up his place at the piano, accompanying Leah Thijs, who sang a song composed by George Gershwin, to which his brother Ira Gershwin wrote the lyrics after George’s death. David Davidse joined her on stage, as did Linda Lepomme, Amaryllis and Liliane Saint-Pierre.

This was the end of the evening’s entertainment, Marc Pinte wished us all a great night. With heavy hearts, we made our way to the foyer, where we could reminisce about the evening with the guest celebrities while enjoying a nice drink.

“ALS Congress” (Sunday)

After a short but refreshing night’s rest, everyone prepared to welcome family members and sympathizers to the ALS symposium. The press started arriving, as well as the speakers and their interpreters. We kept hearing the same question: ‘Is the Chinese doctor here, can we speak to him?’.

At 1:30 p.m., the symposium started. Marc Pinte announced Pol Geerts, our host for the afternoon. Our first speaker was Professor Robberecht. He gave a talk about the disease called ALS, and he explained some of his research to us.

The next speaker was Professor Carmeliet. He presented the results of his recent research on mice and the next steps he will take to further test his break-through.

After this, a silence settled over the audience. The big moment, the moment everyone was waiting for, had finally arrived. Dr. Huang entered the stage to explain his OEG therapy. He showed us some video imagery of his patients before and after the operation. This was followed by a debate between Prof. Robberecht and Dr. Huang. They both clarified their positions and defended their opinions.

The symposium ended with a speech from Professor Betz. He spoke about the dangers of alternative medicine in a talk entitled ‘Miracle Doctor or Quack?’.

Danny Reviers, president of the ALS League, closed the proceedings, thanking everyone who had lent a helping hand in organizing the weekend event, both in front of and behind the scenes, the many volunteers, the sponsors,... Other board members of the League especially wished to thank Danny and his wife Mia. Actress Leah Thys thanked them as well, in name of all the ambassadors, and presented them with flowers.

Lively debates and conversations took place between proponents and opponents of OEG therapy during the closing reception. After his press conference and his one-on-one interviews with the press, Dr. Huang joined us to meet a number of his patients. He also patiently addressed all those who had further questions for him.

And then it was time to say goodbye… Saying goodbye to our old friends and to new ones. Making arrangements to see each other again soon, a kiss, a smile and a tear and… until next year!