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Student Blog: Charity Club visit to ASRIMM

21 September 2019

On Wednesday, representatives from the Surval Charity Club visited ASRIMM in Yverdon to discover a little more about this important charity that Surval supports. Charities Coordinator Ms Spigarelli praised the “inspiring presentation” that was delivered to the students by ASRIMM, in particular its interactive elements. Katie, G11, Ireland, is a new Surval student and member of the Charity Club; below she shares her experience at ASRIMM. 

On September 18th, five other girls and I got the amazing opportunity to visit the Head Office of ASRIMM/Swiss Telethon in Lausanne. We are all members of our Charity Club in school. We were curious and excited to go on this trip as it would educate us on Rare Genetic Diseases and we wanted to help in some way. I felt very honoured to go on this trip as I got to meet three representatives of ASRIMM/Telethon and they were kind enough to tell us all about ASRIMM’s purpose and how they help people with rare genetic diseases.

I joined my Charity Club in school because I wanted to give back to people less fortunate than me. I wanted to have new experiences and to see life in a different way, such as learning what it is like to be a young person who suffers from a rare genetic disease, and do what I can to help. 

My first step in doing this was to go to ASRIMM and learn about ASRIMM/Telethon to see how I, and the other students at Surval Montreux, could help. ASRIMM is a charity for people who suffer from a rare genetic disease. Having a rare genetic disease means that you mostly cannot walk as you feel heavy and weak. People with these diseases have no feeling or power, so even a simple task of picking something up is difficult for them. Their future will not be as they wished and they will now have limited choices in life. 

ASRIMM hope to impact these people’s lives by allowing them to live more of the life they want. It does this in a variety of ways. Firstly, they fundraise to help the children and adults suffering from these diseases, and their families. Additionally, it gives them support and the chance to stop the evolution of the disease. ASRIMM’s work helps to increase life expectancy, in particular by proposing innovative therapies. Although there is no cure for these rare genetic diseases, the sums of the money that they raise goes towards the research of treatments for these diseases. 

One of the ways in which they raise money is through the sale of a small mascot teddy bear. The teddy bear changes every year. We also got to meet this year’s mascot, who happens to be a giraffe! We will be selling these giraffe teddies at Surval in November and December, with the money raised going towards ASRIMM. 

A further goal of ASRIMM’s is to give adults and children the chance to do normal things on their weekends and holidays. They offer a huge range of activities and camps. They hope that, by doing this, it will allow the person with the rare genetic disease to escape their daily lives and problems. They want the children and adults to be able to forget about their diseases and to meet people who are just like them and understand them.

Our visit to ASRIMM was very inspiring and educating. We learned about these people and how hard it can be for them and their families. We were taught about ASRIMM’s purpose, how ASRIMM was started, and their goals. We were given the chance to experience what it would be like to have one of these diseases, as we tried on some weights around our wrists and ankles to experience mobility with the increased body weight and reduced strength caused by having a neuromuscular disease. In October, we will get another amazing opportunity to learn about the science of rare genetic diseases. 

I am thankful for going on this trip as it has inspired me to want to help even more and raise awareness about this problem. Although these diseases are rare, they are still a big problem and have affected many families’ lives. After visiting ASRIMM, I want even more to be able to give back to these people and their families, and my hope for the future is that I will be able to make a strong and positive impact through all my charity work.  

Some further reading...

Student Blog: Wake Up Run to Fundraise for ASRIMM

News: Charity Report 2018/19

Student Blog: My Experience of Charity at Surval