Téléthon

Dear Val,

As a mum of a child with a neuro muscular desease, this coming weekend is so important for us. Of course first friday evening, the charity evening Kim is organising and also Téléthon. I want to ask all of you to donate, buy things or going to the organised activities. It is so important and so many families are involved. And really, the money arrives with the families who are in need of help. It is such a big and good organisation, I contact them for the first time last may. Of course I had heard before of them, but never realise what they are doing. Every region in France has a director, every department has a responsable person and many many volunteers. Marylyne Vigroux is responsable for the Tarn et Garonne and she is great for us. Helping us with all the paperwork (she knows a lot of people), going to (docter) appointments with us, going to schoolmeetings and she is there when we need here. Besides that, there are also groups from AFM who are working from Paris. Laurent, my son, was in need for a portable computer. He had the right to have one from the academie, but there is a very long waiting list. Till ten, Laurent is borrowing one from AFM, a computer specialist came over from Paris to explain and install special programs and mouse.

Special holidays camps for the parents as for the children, congresses, appartements for rent when your child is hopitalised in Paris, so many supports. And it is great to know that you are not alone. And I’m only talking about the direct help to the families. A big part of the money is going to research. There are still so many ilnesses unknown. There are only 600 till 700 neuromuscular diseases I don’t know for the rest but it is clear that research is so important.

So, I hope I confinced you all to donate. You can donate online, english version available,https://don.telethon.fr/?xtor=SEC-2-GOO&idm=42575

Many, many thanks, Miranda

Val says  - you make me feel very humble Miranda. you are writing the above in a second language and have I know  been working raising money for Sethi,  when now I realize you have your own family problems. We have other friends with a sick child at the moment and it is a heart breaking situation. Miranda, I have found that TAG readers are a very compassionate bunch and I am sure they will support Kim' s efforts and the Telethon and it is great to hear  that you have a direct link  to the Telethon.

Malc as a child had cancer and at 12 years old had to have his leg amputated to survive, now at 70  he has a special empathy with the plight of  sick children. I often think of his Mother and how hard it must have been for her. Everyone will do what they can Miranda. 
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