Two years ago, I have been diagnosed with familial ALS (TARDBP gene mutation) after experiencing symptoms since summer 2021. Today (2025), I am 57  and I almost entirely lost upper limb function. I am well supported by my husband and two adult children. I have a passion for travel and singing.

After more than 20 years as scientist in the pharmaceutical industry, I’m honored and happy to join the EUpALS PCEB as pALS where I will find a new sense of purpose.