This is a collaborative project between the Lyoness Child & Family Foundation Association and the Society for Mucoplysaccharidosis.
Mucopolysaccharidosis (MPS for short) is a hereditary metabolic disorder. Caused by a genetic defect the people suffering from MPS are missing an enzyme necessary for the body to break down certain metabolites. These substances build up inside of organs, bones and in the brain and cause severe disabilities.
MPS is rare, but the affected children and families have to deal with the illness nevertheless. Because it is so rare they often also have to deal with a deficit in support and attention as well as a shortage of information about therapies and medical possibilities. For this reason the Lyoness Child & Family Foundation Association decided to support and initiate specific activities of the society for mucopolysaccharidosis.
In collaboration with the Rotary Club Schwechat the kick-off for this project took place at a charity golf tournament at the golf club Himberg. Actor Wolfgang Böck and satirist Reinhart Nowak were also present to support this good cause. The goal was to raise funds for affected children and their families.
The Lyoness Child & Family Foundation Association decided to support a therapy week for 140 people and 29 MPS patients. This week will give them the opportunity to get to know different therapy methods for children with MPS, discuss their experiences, spend some free time together and give each other support and strength, true to the motto “Together we are strong”. Especially for children with such a rare illness the parents, but also their therapists are extremely important. It can also be a big help to exchange experiences.
The Lyoness Child & Family Foundation Association made it possible for four families with financial difficulties to take part in the therapy week. But the CFE didn’t just support those four families. The association also organized certain afternoon activities during the week for all the 140 participants. For example a trip to the tops of Dachstein Mountain and Hochwurzn Mountain including transportation and a ride inside the spectacular mountain carts. Those are excursions that are usually almost impossible for MPS patients.
In addition it was made possible for one MPS patient to take an online course in Graphic & Design and support her in her day-to-day work and help her achieve her wish for advanced training and a self-determined life.
The goal of this project was on the one hand to help four families in need whose children suffer from MPS to take part in the therapy week, and on the other hand to organize activities for all of the 140 participants (patients/family members/caregivers). In addition we wanted to support one of the MPS patients by making it possible for her to take an online course in Graphic & Design and help her achieve her wish for advanced training and a self-determined life.
Mucopolysaccharidosis – Support for people who suffer from a rare illness
July 12th – July 20th, 2014
• A total of 140 participants of the therapy week (patients, family members, caregivers)
• Four families with children who suffer from MPS, who couldn’t have taken part in the therapy week because of their financial situation
• Maria P., MPS patient, who was supported by making it possible for her to take an online course in Graphic Design