Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Today I attended a craft fair that was fundraising for a school and for the The Dystonia Society. I had been rather looking forward to it as it was a great opportunity to raise awareness and to restock my craft supplies – I love to crochet. The fundraiser was busy all day which was fantastic and over £200 was raised for The Dystonia Society.

About halfway through the day I got the opportunity to give a speech on what Dystonia was and what life with it was like. I was slightly nervous that I would be useless and just woffle, but have been reassured the speech was ok 🙂 . I drew on my experiences of living with generalised Dystonia, and whilst I tried to only speak in a positive way, I also spoke in a realistic manner, and sadly Dystonia is not a pink fluffy ball of positivity. I found out afterwards that my speech had reduced some people to tears, which I felt bad about, but it had also inspired several people to do their own fundraising for The Dystonia Society which is incredible!

My church has chosen there september mission to be Dystonia. So they shall also be raising awareness this month which is incredible! I feel very lucky that they have taken on this cause. It was a fantastic day today, and I am so thankful that I was well enough to go down and meet such a lovely group of people.



Comments on: "Craft Fundraiser for Dystonia." (5)

  1. sandy evason said:

    Well done Rebecca, particularly for giving the talk. Please don’t worry about reducing people to tears. In my experience that usually means you have a) touched their Spirit, b) their heart or c) their conscience. So whatever you touched, you touched them. Good to read that your church is going to do something practical but the most wonderful thing of all is, YOPU WERE WELL ENOUGH. Wonderful. Love, hugs and healing prayers to you xx

  2. Good on you for speaking publicly about your Dystonia – I had never heard of it before my diagnosis. Your efforts at awarness make a big difference! Thank you!

  3. Franz Krämer said:

    Rebecca, I think till that you a whole day sacrifice for this collect from donations. It is quite fantastic that you have held a speech about yourself and your dystonia. I have respect before you. Continue in such a way. I believe, it is also good for you.

    Rebecca, ich finde es till, dass Du einen ganzen Tag opferst für das sammeln von Spenden. Ganz phantastisch ist, dass Du eine Rede über Dich und Deine Dystonie gehalten hast. Ich habe Hochachtung vor Dir. Mach weiter so. Ich glaube, es tut Dir auch gut.

  4. You really have been a dystonia activist. Congratulations! This thrills me. The act of solidarity from your church is also commendable!

  5. Rebecca, The Dystonia Society is lucky to have your passionate participation and advocacy. Good for you, I’m sure the speech was fabulous. You keep going girl! -Pamela-

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