association ceo kirsten knox was the guest speaker for our ... autumn mnda newsletter.pdf · of a...

We never lose hope. We strive to find a cure for MND and to support everyone affected by this devastating disease.Registered charity no. 294354.

News from the Nottinghamshire Branch

Autumn2010

Welcome to the Notts Branch Bulletin. We hope you enjoy reading about the latest fundraising efforts by Branch Members and supporters, and don't forget, if you are organising an event and would like to publicise it in the next Bulletin, please contact the Branch Chairman or Secretary (details on page 4).

Association CEO Kirsten Knox was the guest speaker for our AGM in AprilOur local branch Annual General Meeting was held on 15th April at the Welbeck Banqueting Suite in West Bridgford.

The event was well attended by more than thirty members and guests, and we were very pleased to welcome our speaker for the evening Kirsten Knox, Chief Executive of the MND Association, and Dr Whiteley, who is the President of the Nottinghamshire branch.

Kirsten gave an informative presentation on the work of the MND Association and provided us with an update on the current research into MND. After the formalities of the AGM there was plenty of time and opportunity for branch members to enjoy the buffet and socialise.

Branch Secretary Nina Squires with Kirsten Knox, CEO of the MND Association, Treasurer Roger Spells and Vice Chair Mike Foord-Divers at the Branch AGM in April.

Many thanks to Miche and Chris Broad who, with son Stuart, held a fundraising dinner on Monday 5th April at Benton’s Brasserie in Heathcoat Street, Nottingham.A truly red-carpet gala occasion, the evening had a wonderful atmosphere and after the meal, Chris Broad and Mike Gatting gave the diners an entertaining and informal insight into the world of professional cricket. Mike Gatting also acted as impromptu auctioneer-for-the-night in a well-supported sale of sports memorabilia.

Over £7,000 was raised with the money going towards the National MND Associ-ation Wheelchair Appeal. Thanks again to Miche and Chris for a wonderful evening.POSTSCRIPT We are sorry to report that Miche has recently passed away. She will be sadly missed by all who knew her.

Top: The auction of memorabilia, with Mike Gatting in full flow.

Centre: some of the diners chat between courses.

Below: Miche pictured on the night with husband Chris and Stuart.

Supper with the Broads - a night to remember

News inside: Golf Day success p.2 Sticky Parkours! p.2 MND at Chelsea Flower Show p.3 Urgent appeal for Conference helpers p.3 49 Club p.4 Changes to Branch Open Meeting Calendar p.4


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Branch Secretary Nina Squires (front) with Carol Gent, the MND Co-ordinator, Dr. Adrian Wills from QMC, Jim Leadbetter and the team who organised the event.

Golf Day SuccessOn Wednesday 12th May, several teams of keen golfers took part in a tournament at Stanton on the Wolds Golf Club, in aid of Nottinghamshire Branch. After a tremendous days play, the evening festivities began with a Hog Roast followed by prizegiving for the golfers, a charity auction and a raffle with some magnificent prizes. The event was organised by Jim Leadbetter with support from many local companies, friends and families. Several thousand pounds were raised (the final total is still being calculated to include commercial match-funding contributions) which will be donated to our Branch. Congratulations to everyone who made this event such a success.

Nottingham greets local boy Sticky as he stops off on his

1,000 mile challenge!

Above and left: Sticky demonstrated some of his parkour skills during his meeting with the media and spectators at the Castle gatehouse.

“I wanted to help because I’ve always relied on my physical skills - and I can’t imagine living with an illness that slowly deprives you of all your abilities.”

Johnny ‘Sticky’ Budden, a 22 year old film and TV stunt man from Nottingham, has combined endurance running with parkour (also known as ‘free running’) during his recent run from John O’Groats to Paris - a truly epic 1,000 mile challenge to raise money for the MND Association.

Sticky reached Nottingham on Saturday 22nd May and branch vice chair Mike Foord-Divers went to meet him at the press call at Nottingham Castle.

You can read about Sticky’s adventures on his web site: www.stickyparkour.com.

There is still time to make a donation - go to: www.justgiving.com/johnnybudden.

Support with household billsCurent domestic customers of any of the following companies can apply for financial help towards essential household bills and utility debts.• British Gas and Scottish Gas • EDF Energy• Anglian Water • Veolia WaterCharis Grants help to distribute donated funds on

behalf of donor companies or charitable trusts to customers who find themselves in financial difficulties. Charis Grants can help with making an application to these trusts.For an application form contact Charis Grants on 01733 421060 or email [email protected] more information visit the Charis Grants website www.charisgrants.com/


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Nottingham plays host to the Association Annual Conference 2010We are delighted to report that the MND Association’s national AGM and Annual Conference will be held in Nottingham this year at the Nottingham Belfry Hotel on Saturday 11th September.The theme for the day is ‘Together we can make a difference’. It is a great opportunity for people with MND, carers and volunteers to find out more about the disease and the support available. People who live with MND and their principal carer can attend the conference free of charge, the cost for other delegates is £15. For more information contact the National Conference Team on: 01604 611822 or email: [email protected].

An urgent appeal for helpers!!We have been asked by National Office to help with the conference by providing helpers on the day, and we are seeking three or four additional people to join MikeFD and Nina in helping to host the proceedings with the staff from National Office. Duties will comprise handing out literature as members arrive, and general light duties ‘ushering’ and generally helping with hospitality - come on folks, the nation is visiting Nottingham, let’s give them a warm welcome!!If you can offer to help on the day, especially the morning through to lunch, please contact Mike (tel: 0771 289 2611) or Nina (e-mail: [email protected]) as soon as possible. We can help with transport if necessary.

And yet more flowers!Our May open meeting was held at John Eastwood Hospice and we welcomed Erin McDaid from the Nottinghamshire Wildlife Trust to the meeting. Erin gave an informal presentation on his work with the Wildlife Trust and told us about some of Nottinghamshire’s most important wildlife sites. The meeting ended with Erin giving everyone a packet of wildflower seeds. Thank you Erin.

MND Association garden takes Bronze Award at Chelsea Flower ShowOnce again the MND Association, in collaboration with investment managers Brewin Dolphin, was represented at the world famous Chelsea Flower Show. Association founder member Martin Anderson MBE and Sue Hayward, garden designer, worked together to create the ‘Stephen Hawking Garden’, inspired by Professor Hawking’s iconic book ‘A brief history of time’. It reflected the passage of time through the evolution of plants. The garden was dedicated to everyone who has ever been affected by MND, and this year achieved a Bronze Award. It was visited by Prof Stephen Hawking and several other celebrities including Ringo Starr, Helen Mirren and Jo Whiley.Congratulations to Martin, Sue and all those involved with our fantastic team!

Here’s an opportunity for you to win big prizesNational Office are once again organising a fantastic raffle. Tickets cost £1 and the raffle closes on 29th October 2010. The first prize is a holiday of a lifetime or £4,000 cash!The second prize is a flat screen TV or £500 cash, the third prize is patio furniture or £250 cash and 22 runners up will each receive Roberts radios.Raffle tickets will be available at every branch meeting and event or contact our secretary or chairman (details at bottom of the last page). Good luck!

Snap happy?The Disabled Photographers’ Society wants to enable photographers in the UK who may need advice on how to overcome difficulties and take great pictures. If photography is your passion, or you would like to explore this medium, please visit their web site.

They host an online forum where you can ask questions and share information with other photographers. The web site also provides details of events, gallery displays and how to enter competitions, with a selection of inspiring images from previous award winners. Check it out at www.disabledphotographers.co.uk.


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Ilkeston Co-op Travel Fun Day StallThe Long Eaton Carnival and Fun Day was held on Saturday 19th June, and Ilkeston Co-op Travel ran a stall to raise money for the MND Association as part of an initiative by the Midland Co-Operative Group to support the Association as their charity of the year.

The photo shows Steve Clark with Amanda Paynter (on the right) and Jo Attwood, who is a manager from Ilkeston Co-op Travel, and the stall gave a great deal of pleasure to all who took part in the games. Children particularly loved the Shell Game, which was kind of a memory contest where they could win sweets if they managed to match two colours correctly.

All the funds raised on the day went directly to the MND Association National Office, so we would like to thank the Co-Op for supporting us with such a fun event.

Big changes to our Open Meetings calendarThe Committee have decided, in the light of falling attendances, to reduce the number of open meetings from twelve to four per year plus the AGM in April. Meetings will continue to alternate between Nottingham, at the Embankment, and the John Eastwood Hospice in Sutton-in-Ashfield. The November meeting in Sutton is still to be confirmed.

Branch Contacts

Branch Chair Mike Cole Tel: 07775 613 114 e-mail: [email protected] Vice Chair Mike Foord-Divers Tel: 0771 289 2611 e-mail: [email protected] Secretary Nina Squires e-mail: [email protected] Treasurer Roger Spells e-mail: [email protected] Branch Contact Jenny Elston Tel: 07505 023 117

MND Association Contacts

National Office Tel: 01604 250505 e-mail: [email protected] MND Connect Tel: 08457 626262 e-mail: [email protected] MND Association national website www.mndassociation.org

49 Club newsThe 49 club is our monthly draw, with the winning number selected by the bonus ball from the last lotto draw of the month.We currently have nine numbers available for new players, and you may choose your lucky number from any that aren’t already taken.If you would like to consider making a regular donation to the branch in the form of a lottery draw, please contact our Treasurer Roger Spells ([email protected]) or any other committee member.

DIARY DATES - The next Open MeetingsDATE TIME EVENT PLACE CONTACT

Thursday 9th September2010

7.30pm Open Meeting John Eastwood Hospice,Sutton-in-Ashfield.

Mike ColeTel: 0775 613 114

Thursday 14th December 2010

7.30pm Open Meeting The Embankment (formerly Club),Trent Bridge, Nottingham.


Thursday 14th February 2011

7.30pm Open Meeting John Eastwood Hospice,Sutton-in-Ashfield.


An update on Riluzole availabilityWe are continuing to work closely with the manufacturers of riluzole, Sanofi Aventis, to find a long-term solution to the problems of riluzole shortages caused by significant amounts of the drug being exported to other EU member states, where a higher price can be obtained for it. Although frowned-on by the Government and NHS, this practice is entirely legal under EU trade laws.Sanofi Aventis continue to operate their Direct Pharmacy Emergency Delivery system. Anyone who is having difficulty obtaining riluzole should ask their pharmacist to call 0800 854430 to arrange for a supply to be couriered direct to them.

This service is set up to supply riluzole within 24 hours in most cases, and 48 hours maximum.

association ceo kirsten knox was the guest speaker for our ... autumn mnda newsletter.pdf · of a...

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