President of the Austrian MPS Society and Deputy Chair of the Advisory Board of MPS Europe, Austria

Michaela Weigl is a parent, President of the Austrian MPS Society and Deputy Chair of the Advisory Board of MPS Europe, Austria. Born in 1962, married to Martin, mother of five wonderful children. Michaela started getting involved in the Austrian MPS Society right after her daughter Maria has been diagnosed in 1996 at the age of 3 ½ years with MPS IV A. Due to this, her life changed dramatically. She left her job as a teacher for Mathematics, Physics and Chemistry and started to volunteer for the Austrian MPS Society, which she is the president of since 1999. Now, after more than 20 years in the field of rare diseases in general and of mucopolysaccharidoses in particular, filled with hard and engaged work, she believes that her current profession is rather a vocation.

She loves to Make Patients Smile and is quite happy about what she was able to achieve so far. The Austrian MPS Society is a competent and well-recognized contact point, not only for patients suffering from MPS and related diseases and their families but also for all concerned. Michaela organizes national conferences for both families and professionals, therapy weeks for MPS patients, educations for therapists, mums´ time outs, dads’ activity weekends, sibling weeks and meetings for adult patients annually. Raising money to run all these events, to support patients as well as research projects is one of her most intensive tasks apart from giving emotional support to affected families. Together with a half time staff member, it is mainly Michaela´s family who volunteers to complete the daily responsibilities. In 2012 Michaela received the Life for MPS Award. She is also involved in Pro Rare Austria, where she is one of the founding members and board member, member of the international MPS Network and Co-chair of the Advisory board of MPS Europe.