Posted in Archive, September 2013

Craft Fundraiser for Dystonia.


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.



I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

5 thoughts on “Craft Fundraiser for Dystonia.

  1. 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. 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.

  3. Divanicio – Eu sou Psicólogo, Psicoterapeuta, especialista em Psicopedagogia e Gestão em Saúde Mental. Eu vivo com distonia focal do tipo câimbra do escritor. I am Psychologist, Psychotherapist, Specialist in Psychopedagogy and Management in Mental Health. I live with focal dystonia, known as writer's cramp, since my childhood. I believe a cure will be found!
    Divanicio says:

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

  4. Dystonia Muse – I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health care advocate, here to share my life-journey with the neurological movement disorder, Dystonia, which began with a "mis-step" when I was 8-1/2. Though Dystonia may have staged a coup over certain body parts, my heart and soul remain firmly my own. I invite you to join me on my quest to find the comedic lurking in this chronic epic!
    Dystonia Muse says:

    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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