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Unread 05-25-2022, 02:20 PM
Sarah-Jane Crowson's Avatar
Sarah-Jane Crowson Sarah-Jane Crowson is offline
Join Date: Oct 2018
Location: UK
Posts: 1,481
Default A book that banks voices for those with MND

I thought I'd share this initiative as an example of how, from my perspective, art and text (and science) can come together to do something amazing -

(I know Nicholas, the illustrator, but I think it's okay my posting this as it's a book with a very specific audience, so this isn't really a plug. And just that they're such a lovely person, and this is such a lovely project, so I wanted to share it!)

(if anyone has any objections, let me know - mod or not, I am still unsure of the drill here about posting about one's friends, and I'm happy to be advised!)
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Unread 05-26-2022, 02:00 AM
Julie Steiner Julie Steiner is offline
Join Date: Feb 2003
Location: San Diego, CA, USA
Posts: 7,672

That's wonderful, Sarah-Jane! What a lovely project.

I know that for people who start the voice banking process too late, there are banks of donated voices to choose from. Some programs use engaging stories like this one to make the process less boring, although reading this book to a loved one so that one's own voice could be used would of course be a better experience.

I'll look into whether my choir members might help with voice donations.
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Unread 05-26-2022, 04:57 AM
Jayne Osborn's Avatar
Jayne Osborn Jayne Osborn is offline
Join Date: Jan 2010
Location: Middle England
Posts: 6,751

What a marvellous project, Sarah-Jane.

My husband's father died from Motor Neurone Disease, and one of my former teaching colleagues did too, so I've come into close contact with that truly horrible illness.

Thanks for sharing this.

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Unread 05-27-2022, 07:59 AM
Sarah-Jane Crowson's Avatar
Sarah-Jane Crowson Sarah-Jane Crowson is offline
Join Date: Oct 2018
Location: UK
Posts: 1,481

Thanks Julie and Jayne - I'm so glad you feel the same why I do about this project. I love the drawing with the hat - it's full of hope as well as sadness. It's these kind of projects that make me hope for scientists and artists and writers to come together to use their talents to build a - kinder? - world.

Julie, if your choir do that it'd be amazing.

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Unread 05-30-2022, 11:35 AM
Jim Moonan Jim Moonan is offline
Join Date: Aug 2016
Location: Boston, MA
Posts: 3,541

Thanks for this shining light... A few years back a family I know who have a daughter (Hannah) with MS, were a part of this project or a similar one and Hannah now has a voice. (As I recall her older sister banked her voice for Hannah to use.)

I had taught Hannah in elementary school. She had encyclopedic knowledge of Disney songs and characters. Out of the blue, she sent me a video of the whole family dressed in various Disney costumes.

The mother introduced the video by saying something like:
"Hannah wants to tell you something she always wanted to but never could."

Then there was Hannah, smiling as broadly as ever, looking directly into the camera and saying in a voice so startlingly beautiful I gasped:

"I want to tell you that you always made me laugh. Thank you, Jimmy."

And of course I broke into tears of joy —As I am on the verge of doing now thanks to your post.
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