Clubs and Activities Special Events

Surval News: Presentation by ASRIMM

27 November 2019

Surval Charity Club is proud to support Suisse Téléthon and ASRIMM, with several events taking place already this term to raise funds (CHF1316 thus far) and awareness for these charitable organisations: the sponsored “Wake Up Runs” and the student-led sales of the ASRIMM mascots. Recently, Nastya (G12, Russia) spent a day volunteering with some of the boys and girls of ASRIMM, and we are looking forward to her upcoming assembly on the experience. It was fitting, therefore, to close the term with a whole school presentation by ASRIMM representative Leena Fasola, giving all the girls who have supported the charity, whether by taking part in a sunrise run or buying a cuddly mascot, the opportunity to learn more about ASRIMM and ask questions of their own. 

The presentation consisted of an explanation of the science of rare genetic diseases, with a subsequent interactive quiz – the girls had been asked to bring their phones and all participated in a Kahoot competition on what they had just learned: well done to Sophie (G12, Austria) for coming first! An extended question and answer session followed, with many of the girls powerfully moved by Leena’s heartfelt responses and stories of the some of the children she helps. When asked about the emotions she feels being part of ASRIMM, Lenna told us that she is most strongly motivated by hope – the hope of making lives better, both for the sufferers of the disease and their families, and the hope that, one day, a cure will be found for all rare genetic diseases. For now, she expressed her heartfelt gratitude for Surval’s support of ASRIMM: “It means so much to the people of ASRIMM to know that you are thinking of them and wanting to help them; it is an honour.”

Thank you from all of us at Surval to Leena for taking the time to come and share a valuable afternoon with us.

Read on for the personal response of some of our students and our Charities Coordinator, Madame Spigarelli, on the experience…

Katie (G11, Ireland): The part of the presentation I found really moving was when Leena told us about how she was inspired to join Telethon and how much she wants to help the people suffering with rare genetic diseases.

Nastya S (G11, Ukraine): One of the parts of the presentation that I especially enjoyed was when Leena told us why she started working at Theleton, because she wants to help people with various diseases.

Anisa (G11, Mexico): The part of the presentation that had the strongest impact on me was when the speaker showed us the video because it gave me a clearer image about how the treatment works and the pros and cons of this expensive and astonishing treatment that has changed the lives of many people. (Well done too to Anisa for coming third in the Kahoot quiz!) 

Nastya K (G12, Russia): The part of the presentation that had the strongest impact on me was when Leena said that there is a difference between being able to walk but then losing this ability, and never having the experience of walking.  Knowing how it feels when you can stand on your own feet and even do a couple of steps makes it unbearable once you lose it and all that is left are memories. The only thing you wish for is to be able to walk again and experience the same joy. However, if you have never walked and you don’t know what it is and how it feels, you might rather want to fly, but because there is no sense of losing, it makes it easier to deal with. I was very moved by this part because it made me realize how valuable our lives are and every “small” thing (even though it is nowhere near small but we are so used to it), such as walking is very precious. I feel very strong empathy towards people who are affected by rare genetic diseases and I am strong-willed to help them in any way I can, whether it is by making a donation or by taking care of them and spending some time with them in person.

Liza (G12, Russia): I am very grateful to Leena for taking her time and coming to Surval again to deliver the presentation. I was so impressed by everything she said and by how she said it – from all her heart. I think we can all agree that we felt that in all of her explanations and responses. I could feel how much she puts into her job and how much she cares about it. I have also really enjoyed the video about the genetic diseases and the therapy. I have learned so much from it, even though it was quite scientific. What ASRIMM is doing is very admirable and it’s worth lots of respect. Thank you very much to this organisation for giving us an opportunity to support them as much as we can and to be able to contribute to this incredibly important matter. It is an honour for us to be able to give even a small help to the people that really need it. Thank you!

Charities Coordinator, Madame Spigarelli:  I was delighted and honoured to have Leena talking to our students about Téléthon. The partnership Surval has with this Swiss charity started three years ago and, thanks to Mrs Woodhouse, our Charity Committee, and the whole school support, our relationship is stronger than ever. Leena's presentation was very interesting and our students showed great involvement during the Kahoot quiz about the scientific research on cures for rare genetic diseases as well as the moment when they asked their questions. Students were particularly interested to know more about Leena's typical day, what inspires her, and what drives her motivation. Many thanks to Leena for taking the time to share her experience with us in such a busy period of the year, in which she is actively involved in the organisation of the upcoming Téléthon days on 6th and 7th December.