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North Bedfordshire Branch Newsletter

The Newsletter is now available in Adobe Acrobat PDF format. To view the Newsletter, left click on the link below. To download the Newsletter to your computer, right click on the link and select the appropriate command to save the file.

                                                                                                                               Autumn 2009 Newsletter

Interview with Colin about living with Motor Neurone Disease

Colin Knight was interviewed by the Luton Today/Times and Citizen newspaper.  The interview and video is available by following the link  

http://www.lutontoday.co.uk/todays-choice/VIDEO-Living-with-motor-neurone.5168392.jp

Advice about Swine Flu

Information about Swine Flu. You can find this on the home page of mnd website www.mndassociation.org.

Donations received by the branch

The branch gratefully acknowledges the donations received from

Colworth Striders, 

Thomas Gillings-Rice

Supply of Rilutek

Kirstine Knox, Chief Executive MNDA, has provided an update about the supply of Rilutek, also known as Riluzole. See below.

On August 20, the Association hosted a round-table discussion with all parties involved in the supply of Rilutek, from manufacture to dispense. The organisations present were:

-          Sanofi Aventis (Rilutek’s manufacturer)

-          The British Association of Pharmaceutical Wholesalers (representing the three wholesalers who supply Rilutek to pharmacists)

-          The Pharmaceutical Services Negotiating Committee (representing pharmacists)

-          The Association of the British Pharmaceutical Industry (representing the research-based pharmaceutical industry, the people who make medicines).

  The Department of Health also attended.

During the meeting all participants agreed that supply problems with Rilutek must be viewed as a priority.  They each stated their commitment to work together in order to reach a short-term solution.    Several ideas were discussed and we will be reporting on their progress during October/November.   

Chief executive, Dr Kirstine Knox , commented after the meeting: “We are grateful to all the organisations for attending this meeting and I am impressed by the commitment they have shown to ensuring that a stable and secure supply of Rilutek is available as soon as possible.

  “I would particularly like to thank Sanofi Aventis, whose contingency measures have so far proved highly effective in getting Rilutek to those who need it when it has been unavailable through the normal channels.”

People with MND who have difficulty obtaining Rilutek can ask their pharmacist to contact Sanofi Aventis, who have instituted a Direct Pharmacy Emergency Delivery system. Pharmacists should call 0800 854430 to arrange for a supply to be couriered direct to them.

Kirstine's contact details are:  email: kirstineknox@mndassociation.org;  telephone:  01604 611820 if there is further information you may wish to share with her.

Article For Sale 

(in conjunction with information from Head Office who cannot accept responsibility for the condition of items advertised. All arrangements should be made directly between buyer and seller. Where specialised or lifting equipment is concerned, you are strongly advised to seek advice from your Occupational Therapist and the manufacturer as to suitability and health and safety requirements)

Interesting Tidbits

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