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Allerdale Branch of the MS Society Conference 14th May 2017

I was delighted to be asked to chair this education conference run by the Allerdale Branch of the MS Society.  There was an excellent turnout of over 70 members and the venue was the delightful Hundith Hill Hotel. http://hundith.com/

The programme included an excellent talk about the Brain Bank by Dr George Gveric from Imperial College.

You can read more at https://www.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bank

His presentation was followed by Dr David Footitt Consultant Neurologist from the Cumbria Partnership NHS Foundation Trust.  David was well known to the patients in the room and has been at the forefront of developing services for MS in Cumbria.

 

 

 

 

 

David described the choice of drugs currently available for people with MS and there were lots of questions afterwards.

Yvonne Booth from 10 in 10 an amazing fundraiser showed an inpirational video about her fundraising and her husband Duncan.

http://www.10in10.org.uk/

Do think about registering with 10 in 10 to raise funds for MS

Julia Walker spoke next about her work with Lake District Mobility.  Her project offers amazing access in the National Park to people with disabilities, and we are going to support her and work jointly on developing the range of Changing Places available.

http://www.changing-places.org/

https://www.facebook.com/lakedistrictmobility/

 Julia Walker

We finished the day with another inspiring talk about the Calvert Trust Kielder by Karen Diamond.

http://www.calvert-trust.org.uk/kielder/kielder

 

Contact details for Cumbria MS groups

We had a break for afternoon tea which was most delicious and time for lots of networking.

Many thanks to Hilary Windsor and all the team for inviting me, and we look forward to seeing you at our Cumbria Alliance meetings.

 

Public Health Alliance – 3rd Sector Representative needed – Cumbria

Received via Cumbria CVS

Please find attached details of the current vacancy for a third sector representative to sit on Cumbria’s Public Health Alliance.

The representative will join Sheila Gregory (Carlisle Mencap and Chair of the Public Health Alliance) in representing the third sector in Cumbria, through the Cumbria Third Sector Network and its various specialist networks.

–          Relevant Terms of Reference, person spec and role description

–          Application form

If you are interested, please complete the application form and email to jozib@cumbriacvs.org.uk by Friday 9 June 2017.

If more than one suitable application is received, the Cumbria Third Sector Network members (through specialist networks) will be asked to elect a representative.

PHA TSN App May 2017 (2)

Role Information PHA Third Sector Rep 2017

Theresa Westhead Huntington’s Disease

We were delighted to have Theresa come to speak to the Cumbria NA last week.  We had a large turnout of members at A Chance for Life in Penrith, and a lively discussion with Theresa afterwards.

Huntington’s disease, which is often called HD, is an hereditary disorder of the central nervous system. It used to be known as Huntington’s Chorea or HC. Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms. The disease affects both men and women.

She is keen to make contact with people interested in the disease and can be contacted at  01942 864645 theresa.westhead@hda.org.uk  She covers Cumbria, Lancashire, Bolton & Wigan

You can see more at https://www.hda.org.uk/hd/what-is-hd

Safeguarding Adults in Cumbria 

The name and numbers for the Locality SAMS (Safeguarding Adults Managers). Part of their role is to offer and support, advice and guidance to providers within Cumbria.

To find out more about Safeguarding Adults in Cumbria, go to: http://www.cumbria.gov.uk/healthandsocialcare/adultsocialcare/safe/

UN Committee on the Rights of Persons with Disabilities publishes issues to present to UK Government

Via Disability Rights UK news

“Disability Rights UK was very pleased to give evidence to the UN Committee in March, based on discussions with large numbers of disabled people around the country. We are glad to see many of the issues we raised reflected in the list of issues “

Public health working with the voluntary sector

The Local Government Association (LGA) has published a report in conjunction with Volunteering Matters highlighting where public health is successfully working with the voluntary sector across the country. The increasing emphasis on prevention and integration has brought new opportunities for the sector, which has stepped up to meet the challenge. New investment has been particularly positive at a time when statutory agencies as a whole were often looking to reduce funding. Now, at a time of severely constrained resources for both local government and the NHS, it is even more important that we work together as equal partners to mobilise all our assets to tackle poor health and health inequalities.

Read more at:

http://www.local.gov.uk/documents/10180/8150261/1.35_VCS_WEB.pdf/188281e7-0542-4023-9563-8f543215cd6e

First Cumbrian Supporter Group Meeting – Brain Tumour Research

Thursday 20 April 2017 at The Roundthorn Country Hotel, Beacon Edge, Penrith CA11 8SJ from 6.15pm – 9.00pm

Light refreshments will be served.

This will be an opportunity for all of our Cumbrian supporters to meet together at one venue, find out about our latest fundraising campaigns, share ideas and personal experiences and discover many things that you didn’t know are happening across the field of brain tumour research. The guest speaker at the event, our Director of Research Dr Kieran Breen, will provide insights into the latest research within our four Centres of Excellence. Our research teams represent the UK’s largest collaboration of laboratory-based experts, investigating adult and paediatric brain tumours as well as high and low grade brain tumours.

There will be opportunities for you to ask any fundraising and/or research questions.

If you and any family members, friends or other interested parties would like to join us, please RSVP by email or phone by the Monday 10 April, as places are on a strictly first come basis.

RSVP Sara Eltman sara.eltman@braintumourresearch.org M: 07590 847355