Wave Heroes 2023
We would like to introduce you to:
Michiel Scheeren was diagnosed with ALS in April 2021. Since then, he has worked tirelessly to fight the disease he is personally affected by. For instance, he is a board member of the ALS patients' association and regularly participates in actions and events. Last year he was also a Wave Hero and this year more than 20 people are swimming in Team Scheeren!
Hennie Klein Gunnewiek died on 23 December 2021 as a result of ALS. Hennie had a fine group of carers around him, whom he called Sisters Klivia. They were able to care for him at home until the end of his life. Hennie was a very colourful person, born in a small village in the east of the country, but coming home to the rainbow community of Amsterdam! The sisters remain committed to eliminating ALS from the world.
Meet Wave Hero Kitty Loonstijn. Nominated by her colleague Charlotte, she is described as the most exuberantly cheerful, sweet colleague you could wish for. One of those colleagues who always comes to work in a good mood and for whom no job is too much or too tough. During lockdown, for instance, she transformed her house into a pick-up point for our customers. Nothing is too crazy for her. She was diagnosed with ALS last year and has been fighting hard against her disease ever since.
Jan Braas was diagnosed with ALS in 1998, from which he died in 2004. His son Arne likes to put him in the limelight and looks back. During the illness, Jan always saw the positives, always opportunities to still be able to do something while he had just taken another step backwards. He had always worked as a customs officer until a few months before his death, until he developed ALS. When that was no longer possible, he became a supervisor of the construction of new vessels. He was able to keep doing his job thanks to aids like a fully adapted bus, control of his computer via a laser, but especially thanks to the support of his wife, my mother.
Arne has participated in every edition of the Amsterdam City Swim, since 2014 his girlfriend has also swum every edition, his sister has also regularly jumped into the canals.
Wave Hero: Johan Masure (photo to follow)
In January 2020, the diagnosis of ALS was confirmed to everyone's dismay.
The disease seized Johan at lightning speed and took a little more away from him every day. Since we live in Switzerland, he found the French description "la maladie des milles adieus", "the disease of saying goodbye 1,000 times", very apt.
Always an active, sporty and driven man, Johan fought against deterioration with enormous courage, positivity and dignity, trying to make something good out of every day left to him. It gave us the opportunity to spend many more beautiful and important moments together.
Johan inspired many people because of the way he dealt with his illness but unfortunately could not win this battle and passed away on 5 August 2021.
To spare others this suffering, we, Marian, Arthur and Frederik, wife and sons, want to do our part to find a therapy. We participated in the 2022 ACS for the first time with a team of 10 people in which we raised 16000 euros. This year, we hope to at least match this.
We are sure Johan would have been proud of all the participants in his Team.
Wave Hero: Angelique van der Lit (photo to follow)
Wave hero Angelique van der Lit's strength and positivity is an inspiration to her entire team. Since 2018, she has been diagnosed with ALS. From then on, the team has been committed by taking action in various ways. From the Local Swim IJsselstein, Tour du ALS to this year's Amsterdam City Swim. The team has a different composition for each action, but the goal is always the same: to raise as much money as possible for ALS. Angelique is the driving force behind these initiatives and would love to nominate her team as Wave Hero.
Since being diagnosed, Angelique has not sat idly by. She is committed to ALS in various ways. For instance, she is involved in the ALS patients' association and is a member of several organisations related to ALS. A true wave hero in other words!
Want to read more? Angelique regularly writes blogs. You can find them on the team page.
Wave Heroes wanted
Would you like to put your loved one who is fighting (or was fighting) ALS/PLS/PSMA in the spotlight by nominating him or her as a Wave Hero? Let us know and share your story!