Charity Marathon for #Victorkracht

A few months ago, our team received some touching news from our dear colleague and revenue manager at PREM Hospitality Continental Europe, Kristoffel. His little son Victor, only a few months old, was diagnosed with the rare muscle disease SMA Type 1. When we heard this news, we immediately put our heads together to come up with ideas to support Kristoffel and his family.

Victor’s Story

Little Victor, the son of Kristoffel, was born in July 2019. Victor is a courageous little fellow who brought new happiness into our colleagues’ life since his arrival. In November 2019, however, Victor was diagnosed with the rare muscle disease SMA type 1. SMA is a disease which affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or even breathe. It is the number one genetic cause of death for infants.

A new drug, Spinraza®, was launched in September 2018. Thanks to Spinraza®, Victor gets the chance to grow older than 2 years. Victor undergoes painful spinal cord punctures every four months, which stop the loss of nerve cells but do not restore lost cells.

Pharmaceutical companies are experimenting with the development of new drugs for the treatment of SMA. One of these medicines is ZOLGENSMA®, which creates a functional copy of damaged genes. The first results of this gene therapy are promising and have shown good results in some patients. Unfortunately, it is the most expensive medicine in the world. The 1-time only treatment costs 2.1 million (US) dollars or 1.9 million euro. In December 2019, pharmaceutical producer Novartis announced a worldwide lottery system, which takes place every two weeks, where one SMA patient will receive ZOLGENSMA treatment free of charge. Up to 100 children will get lucky in the lottery. But should Victor’s life really depend upon a lottery ticket?

Marathon for Victor

When Bouke Koppert, our COO of PREM Group Continental Europe, learnt about this news, he started training for the Rotterdam marathon. With less than two months of training left, Bouke, a novice runner said “if Victor has the strength to battle against SMA, then I will have the strength to run a marathon for him.”

This is a challenge that Bouke has been preparing for and working hard to ensure he completes the marathon will take place on Sunday, April 5th .

With your support we are hoping to raise funds for Victor, with the hope of covering his medical bills.

We have received much appreciated support to date but there is still a long way to go.

We are seeking sponsors for Bouke’s marathon in aid of #VictorKracht. Please do not hold back, Victor can use every penny he can get. The training for the marathon, more information about the sponsors and his final result can be followed on our PREM Group social media channels.

Visit the PREM Group Facebook Page

Visit the PREM Group LinkedIn Page

#Victorkracht

Through the website #VictorKracht (“Muscles for Victor”), the family advocate for a human solution for SMA patients and their families. At #VictorKracht they will keep you informed of Victor’s journey to regain muscle strength. If you also want to contribute to #VictorKracht, then please register as a Friend of Victor. His family are grateful for every financial donation, no matter how small. Every donation, small or large, will help Victor on his way to becoming Vigorous Victor again.

BE24 0689 3697 2638

More information can be found on www.victorkracht.com as well as on the Facebook page Victorkracht