Amy Rusak MPS IVA

Amy Rusak MPS IVA

Amy Rusak Obituary December 30, 1978-July 17, 2024 With deep sorrow the family of Amy Louise Patricia Rusak, announce her peaceful passing on Wednesday July 17, 2024. Amy directed her personal care all her life and the services of MAID allowed her to leave on her own...
Natasha Kaweski (MPS IV)

Natasha Kaweski (MPS IV)

In 1995, siblings Natasha and Damien were diagnosed with the rare genetic condition Morquio Syndrome, also known as Mucopolysaccharidosis IV (MPS IV). This journey has been filled with many challenges, but also incredible accomplishments and personal growth. ...

Loïc Bydal – MPS IV

Loic passed away in February 2024. He was a courageous and determined being and touched the lives of many. Here is is letter to you all recounting his journey in his own words. The original French version is posted below the English translation. “Good evening to...
Elovic MPSII

Elovic MPSII

C’est difficile pour moi de dire précisément ce que le mot “Maman” veut dire dans de telles circonstances.   Quand Elovic était jeune, il disait maman à toutes les femmes qu’il croisait en leur prenant leur main. Si bien que les femmes riait en lui disant, “Je ne...
May is the month for MPS awareness!

May is the month for MPS awareness!

Every year May 15 is observed internationally, to raise awareness against mucopolysaccharidoses (MPS). MPS are rare genetic disorders in children and adults caused by the absence of a specific enzyme. There are 7 types of MPS. It is estimated that 1 in every 25,000...