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MND Motor Neuron Disease

MND Scotland

MND Scotland
As of today the “Scottish Motor Neurone Disease Association” have rebranded to become “MND Scotland”.
Their new web site can be found here.

New Identity for the Scottish Motor Neurone Disease Association
The new name and logo reflect the organisation’s values by putting those affected by Motor Neurone Disease (MND) in Scotland first. The logo contains a blue ‘Cornflower’ icon that is easily recognisable and was chosen as it signifies hope for the future. The Cornflower is a hardy, wild flower native to Scotland and countries where it survives in the most challenging environments. The Cornflower reflects the resilience of people affected by MND – as they face up to the challenges of life.

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Emma Family MND Motor Neuron Disease

Celebrating the Life of Emma Berry Goodman

Celebrating the Life of Emma Berry Goodman

18th April 1991 – 7th September 2008

Emma Berry Goodman
Emma Berry Goodman

I’d like to thank EVERYONE for all of their gestures of kindness and support.
It lifted my heart to see everyone at Emma’s service wearing bright colours as was her wish.
Many people have asked for a copy of the tributes that were read during the service so I have posted them here:

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Family Fundraising Motor Neuron Disease Ross Sarah

Scottish MND Fun Run 2008

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Sarah and I managed to finish the 2008 Scottish Motor Neuron Disease Association (SMNDA) Fun Run 10k (6 mile) route in a respectable 1 hour 20 minutes.

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Fundraising MND Motor Neuron Disease Ross Sarah

New Training Partner

Sarah Goodman, my 13 year old daughter decided to join me on my run tonight.

She did great, she did’nt slow me down any. I am keeping track of my training in a Google spreadsheet here.

We are in training for our upcoming fundraising events.

See the widgets on the right if you would like to donate.

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Emma Family MND Motor Neuron Disease

More Media Exposure

Pick Me Up Logo

A while back my daughter; Emma Goodman, was interviewed by a researcher from The Press Association who was interested in her story.

She has just called to say that Emma will be featured in the Spring Special edition of the Pick Me Up magazine that goes on sale this Friday.

I have just picked up my copy: 14th march edition, page 27.

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Family MND Motor Neuron Disease

Fundraising

Money

In case you have not noticed I have created a  fundraising page.

I will be doing sponsored events for the Scottish MND Association, Childrens Hospice Association Scotland (CHAS) and for Marie Curie Cancer Care.

Have a look here and please give generously !

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Emma Family MND Motor Neuron Disease

Ambulance At Our House


Just some rumour control for anyone who may have seen the ambulance at our house on Saturday night.
Emma took some chest pains but she is better now.

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Family MND Motor Neuron Disease

Rachel House

Last weekend we spent a fantastic time at Rachel House in Kinross Fife.

We had a very relaxing time, and got the chance to take some nice photos in the garden too !
You can also see the photos at the newly created CHAS Flickr Group.

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MND Motor Neuron Disease

Starting To Feel Like Christmas!

I don’t know if it’s the sudden cold snap, but I am starting to feel more Christmassy !

To help get into the mood it’s time to get the cards done, or buy next years if you are super organised!

Check out these cards (PDF Catalogue) from the Scottish Motor Neurone Disease Association.

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Emma Family MND Motor Neuron Disease

Emma’s Progress

Not a lot of updates on Emma’s progress recently so here we go.

Emma’s power in her arms and wrists has deteriorated severely over the last few weeks.
This we have seen coming  for a little while, we have been helping her to eat for six months or so.
The biggest impact this is having is that she can no longer use the keyboard on her laptop: so her online presence on Bebo and MSN has been brought to a premature end.
She has already been assessed for alternative input tools such as an eye controlled system. This happened when she was last at Rachel House so I never got a chance to find out more.

More worryingly the muscles in her throat are starting to weaken so she has started to choke on her food occasionally.