for Sep 17, 07:07
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BARNEVELD Raise 400,000 euros within two years for the fight against the debilitating and deadly Huntington’s disease. That is the aim of the national campaign ‘Zuur eh?’, an initiative of Ladies’ Circles from Barneveld and the surrounding area. With a bright yellow lemon as an eye-catcher.
When the photographer arrives, the knife goes into a lemon and Hilde Brouwer (41), Marjoescha van Alphen (40) and Rebecca Sytsma (31) each take a piece. Then they sink their teeth into the citrus fruit. Less than two seconds later, the sour taste is reflected in grimaces on their faces.
TO BITE ,,The bite of a lemon symbolizes one of the visible features of Huntington’s disease, which is the contraction of your muscles”, Hilde explains a little later. With the ‘Zuur huh?’ campaign, the Ladies call on everyone via a website, Instagram and Facebook to bite hard into a lemon and to post a video or photo of this with the addition #acidhè.
“We hope that young people and the elderly across the country will join us through our challenge to raise awareness for this acidic disease and raise money to fight it,” she explains.
Hereditary In short, Huntington’s disease is a hereditary brain disorder, in which physical and mental complaints become increasingly worse. One of Hilde’s best friends, Saskia, will be told in 2021 that she has Huntington’s disease. “Her mother had been diagnosed with the same thing over a year earlier. I’ll be full again when I tell you this.”
“The cause of Huntington’s is a deviation of a certain gene and that is hereditary,” says the resident of Kootwijkerbroek. “If one of your parents carries the gene, he or she will get the disease. The chance that you also carry the gene is fifty percent. It’s already a nasty disease, but that makes it even more terrible.”
DEMOLITION “Sometimes half families are wiped out,” Marjoescha and Rebecca add. “The disease damages nerve cells in the brain. From the moment of the first symptoms, the remaining time of life is on average fifteen years. It is a degeneration process with symptoms of Alzheimer’s, Parkinson’s and ALS muscle disease.”
For Hilde, the bad news was reason for her friend to take action. “It is such a terrible disease, but unknown to most people, that has to change.”
There are no precise figures, but according to the Huntington Association, approximately 1,700 Dutch people probably suffer from this disease. In addition, it is estimated that between 6,000 and 9,000 people are at risk for Huntington’s disease.
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Marjoescha, Rebecca and Hilde (from left to right) are members of the campaign team. Photo: Pauw Media
COUNTRY Hilde is a member of Ladies’ Circle (LC68) Barneveld and her friend Huntington from LC63 Ede, where she lived for a number of years. The association for enterprising women has the motto ‘Friendship and Service’ and is committed to charities by collecting money and volunteering.
At LC68 Barneveld and LC63 Ede, there is immediate support for the Huntington project. “In these clubs we know Saskia and we are of course personally and emotionally involved.”
There is also national support. During the general members’ meeting of Ladies’ Circle Netherlands in May this year, hands will come together for the Huntington campaign from the Barneveld region. Until May 2024, the national commitment is to raise €40,000 for this charity for education about Huntington and support for families affected by this. In addition, the money is intended for research into a medicine.
JOINED FORCES A call from Hilde for assistance from the Barneveld area is answered: in addition to LC63 Ede, LC77 Leusden and LC Berg en Bos (under construction). ,,We now have a top team with seven ladies from four Ladies’ Circles.” Marjoescha and Rebecca represent the Ladies from Ede and Leusden. ,,We didn’t know each other”, says Rebecca, ,,but isn’t it wonderful to contribute to such an important project?” The other four team members are Margreet de Boer-Wierenga (Barneveld), Anke van Middelaar (Leusden) and Michelle Wijsman and Shanna van der Linden (Berg en Bos).
The action ‘Sour, huh?’ biting into a lemon already existed, the three of them say. “We have now developed that further.” They receive professional help from film and animation studio Redrum from Ede. Co-owner Carlijn Pluijmakers is a member of LC63 Ede. ,,That’s the charm of our network”, says Marjoescha. “There is so much expertise. We really do this by joining forces. And of course we also want to mobilize all almost a thousand members of the 75 Ladies’ Circles in the Netherlands.”
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One of the campaign posters.
AMBASSADORS De Edese refers to the Ice Bucket Challenge for muscle disease ALS, which became a worldwide craze in 2014. Everyone was challenged to throw a tub of ice water over themselves and post it on social media. In addition to a lot of publicity, this generated an enormous amount of money.
,,Of course it would be great if ‘Sour, huh?’ also becomes a hype”, says Marjoescha. “We try to find well-known Dutch people and influencers to promote our campaign.” Radio presenter and DJ Jan-Willem Roodbeen and actress Carolien Spoor, who has a sister with Huntington’s disease, are already ambassadors of the ” Sour, huh?’ campaign.
LAUGH AND TEAR ,,The basis is now there with a beautiful website and accounts on Instagram and Facebook. We hope for an oil slick effect”, say Hilde, Marjoescha and Rebecca enthusiastically. ,,We still have a lot to figure out, but we’re plowing through it together, with a smile and a tear, and there’s a great team spirit.”
The Ladies are also in contact with doctors from three academic hospitals – AMC Amsterdam, LUMC in Leiden and MUMC in Maastricht – who specialize in Huntington’s disease. And with the National Huntington Association. “They are enthusiastic about our campaign.”
The sale of ‘promotional’ items via a web shop should also generate money for charity. The range includes t-shirts, linen bags, hoodies, pins, notebooks and limoncello. All with images of lemons. And posters are being distributed all over the country. ,,There is more to come, so keep an eye on our webshop”, the trio emphasizes. In addition, Ladies’ Circles are launching campaigns across the country to raise awareness of Huntington and fundraise.
BEAUTIFUL FLOW It is indicative of the enthusiasm of the team members, who are happy to work for this as volunteers, in addition to work and family. ,,We invest time in it and it is a priority for us. If we were a company, it would run really great. We are in a nice flow and will ensure that this campaign is a success!”
More information via the sites zuurhe.nl at huntington.nl. You can make a contribution via the QR code at the bottom of this article or bank account number NL37 ABNA 0813 1021 03 in the name of the National Service Council. The campaign team can be reached by email at [email protected].
By Wim Vonk
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HUNTINGTON’S DISEASE
Huntington’s disease is a hereditary brain disorder in which nerve cells are damaged and the symptoms get progressively worse. Your body makes movements when you don’t want to. Talking and swallowing may become more difficult. Your behavior also changes. For example, you become gloomy, anxious or easily angry.
The cause of Huntington’s disease is an abnormality of a certain gene. This abnormality is hereditary, so you always get the disease through one of your parents. If one of your parents carries the gene, he or she will get the disease. The chance that you also carry the gene is fifty percent.
If you have Huntington’s disease, you will suffer from various complaints. The longer you have the disease, the worse the symptoms become. You have physical complaints, but also mental complaints. The physical complaints are the first to be noticed. The mental complaints are often much less noticeable, but they are also heavy. Both for you and your loved ones.
Common features of Huntington’s are: you make movements you don’t want to do, you have stiff muscles, you think and see strange things, you have trouble walking, you become clumsy, you lose weight, you forget things, you become easily angry, you feel gloomy. You can suffer from multiple complaints. Which these are can differ per patient.
The first symptoms usually appear between the ages of 35 and 45, but can also occur earlier or later in life. There is as yet no drug or effective treatment that slows Huntington’s disease. There are already treatments that can help control some of the symptoms and a lot of research is being done to slow down or even stop the disease.
Sources: hersenstichting.nl on huntington.nl
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