My name is Tom van der Wal and my wife’s name is Tonia van der Wal (born in 1952 and 1954 respectively).
In 1998, we came in contact with the department of Clinical Genetics because of the high incidence of cancer in our family. This was the first time we were confronted with the Li-Fraumeni syndrome. In our family of fourteen brothers and sisters, already eight people developed cancer, four of whom died. They died at ages 5, 27, 53 and 57. If this wasn’t already enough, a child of my eldest sister died at the age of 3 from a brain tumour. In 1998, I was diagnosed with disseminated melanoma. Luckily, surgeons were able to radically remove the tumor with all its lymph nodes. Now, nineteen years later, I am being treated with Dartumumab for multiple myeloma – the disease I have been diagnosed with since the start of 2016. The first results are hopeful, but there is still a long way to go.
Shortly after my treatments in 1998, there was little knowledge about Li-Fraumeni syndrome, which was something that triggered Tonia and myself. We have worked hard to produce a brochure for general practitioners, a standard of care with different stakeholders, and we started a website: www.lifraumeni.nl. Nevertheless, the biggest success is undoubtedly the introduction of a yearly whole body MRI scan for all proven mutation carriers in the Netherlands. The Toronto protocol and our organization played a major and decisive role.
As proud co-chairs of the LFS Association, we will strive to continue to inform patients and their families about all corresponding subjects surrounding Li-Fraumeni syndrome. The collaboration with the LFS Association is a welcome one. Li-Fraumeni syndrome is very rare and only together we make a stand. Visit our website at www.li-fraumeni.nl. You may contact Tom at email firstname.lastname@example.org or Leendert at email email@example.com.
– Co-Chairs Tom Van Der Wal & Leendert Zaaijer