In Memoriam, Tiffany and Maryze

Maryze Schoneveld van der Linde
1970 - 2025
Age 54

Tiffany House
1983 – 2025
Age 42

It is with great sadness that we report the sudden and unexpected loss of two of our most treasured friends in the Pompe community within the space of two weeks. It is only a short time since Tiffany was expressing her grief at losing her very close friend, Maryze. Both remarkable young women were severely affected by Pompe disease, and they both had phenomenal strength of character and a strong desire to help all those individuals and families who live with the condition, and both were working tirelessly for their national and international patient support organisations.

We have worked very closely with both Tiffany and Maryze through membership of the International Pompe Association (IPA) and have often been deeply moved by their dedication to the community they serve. Maryze spent her life building networks throughout the world such that when a child or baby is diagnosed with Pompe disease, it is Maryze that they reach out to in the first instance, no matter where they live.

Maryze, together with Tiffany and her parents were instrumental in founding the IPA and, over a period of about 10 years, preparing for the market approval of Myozyme. Both have worked closely with many biotechnology companies and drug regulators to help those in most need to access to therapy.

Our chair remembers the day when Maryze herself was offered Myozyme in around 2005; she rang him excitedly saying “now I need to think about my pension!”. It is sad that she could not reach pensionable age; she so deserved it. But we are fortunate that she was able to contribute so much to the community around the globe.

Maryze and Tiffany, you both will live in the hearts of the International Pompe community.

Pompe Support Network