MND Isle of wight

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The Isle of Wight Branch join ‘Strictly’ star Charlotte Hawkins to raise awareness of Motor Neurone Disease

Members of the local Motor Neurone Disease (MND) Association were invited to a parliamentary reception with Good Morning Britain presenter and former Strictly Come Dancing star Charlotte Hawkins to raise awareness of the immense financial hardship families can face when trying to cope with this rapidly progressing, fatal disease.

 

They were joined by 130 other branches and supporters from England, Wales and Northern Ireland who met with over 50 MPs and Peers at the Westminster reception.

 

The event was jointly hosted by the MND Association and the All-Party Parliamentary Group (APPG) on MND, who launched their report on access to Personal Independence Payment (PIP) for people with MND. PIP is a benefit for people aged under 65 to help pay for the extra costs of living with a disability or health condition. Following an investigation, the APPG found that people with MND are experiencing problems throughout the PIP process – from finding out about the benefit in the first place, to gathering medical evidence to support their claim, being called for a face-to-face assessment and then being reassessed unnecessarily.

 

Charlotte Hawkins, whose father died of MND in 2015, was one of the speakers at the event. She opened up about how MND affected her family, and urged MPs to help people with MND to get the financial support and benefits they are entitled to, at the right time.

 

She said, “It broke my heart that my Dad still wanted to be able to get out and about but we couldn't get access to the right wheelchair for him in time - not long after it was then too late as he wouldn't have been able to use it. Again - when he began to lose his speech and we looked into what equipment was available to help him - we couldn't get it quickly enough. That makes a difficult and traumatic disease even more frustrating to live with.

 

“MND is tough enough without having to worry about finances and so it’s vital that people with MND can access financial support such as PIP. The system should take into account that, sadly, the person isn’t going to get better and is actually likely to get worse very quickly.”

 

Jennie Lewis, Chair of IOW branch said: “It was great to be at the reception and to speak with MPs about the importance of financial support for those living with MND. Myself, Gioia Minghella-Giddens and Joyce Rice from the IOW branch had a very positive discussion with Bob Seely, MP for IOW, who has promised to help."

 

Sally Light, MND Association’s Chief Executive said “ We would like to thank all our supporters who travelled to Westminster to highlight to MPs about the massive financial impact of MND is having, and the devastating effects on families who are struggling to cope. Research shows that people with MND and their families face extra costs of £1,000 a month on average, so people need fast access to benefits such as PIP.

 

As part of our MND Costs campaign to end the financial hardship of MND, we will continue to lobby the Government to ensure people with MND have better access to the benefits they are entitled to. We fully support the APPG’s report recommendations on access to PIP, and we look forward to working with the APPG and the Government to address these recommendations.”

 

Cowes Fundraising Collection

Cowes Fundraising Collection

click image to enlarge

A great day spent in Cowes on Friday 4th August raising funds and awareness for MND.

 

We raised just over £80 on our table plus more from our volunteer street collectors, a total of just under £600.

 

Thank you so much to everyone who came and supported us and the Tu Tu's definitely made us stand out in the crowd.

 

 

 

 

 

 

 

 

Raffle

Charity Raffle Winning Ticket Announced

The Isle of Wight Branch of the Motor Neurone Disease (MND) Association is very pleased to announce the winning ticket for their charity raffle to win TWO IOW Festival tickets was won by white ticket number 00004.

 

The lucky winner wishes to remain anonymous but this is a person who is a long-standing supporter of our branch whilst living on the Island and has continued that support after she moved away to the mainland. In keeping with her generous nature she immediately gave the tickets to a family on the Island so they could enjoy their first Festival.

 

The picture taken on a blustery Gurnard Green on 2nd June shows Jody, Niki, Shannon and Casey Dunn receiving their tickets and ‘goody bags’ from IOW Branch Chair, Jennie Lewis and IOW Branch Minute Secretary, Doreen Gant.

 

Jennie commented ‘We couldn’t be happier that an Island family will get to experience the Festival for the first time. We are so grateful to Solo Promotions for picking us to receive the free tickets in the first place. We had wonderful support from local people as usual with staff at GKN in particular buying 130 tickets. The lovely team at Newport Fire Station were also generous with their purchases. We would like to thank ITS for their donation of wellies for our Goody Bags plus buying a great amount of tickets, and Red Squirrel in Newport for being a ticket seller – thanks Tamara!’

 

The raffle raised an impressive £500 which will all go to help local people on the IOW living with MND.

 

Our next event is a Summer Fayre on Saturday 17th June at Northwood Primary School. Free entry and all are welcome – see Weekender prior to the fair for further details.

 

Jennie Lewis

Chair - IOW Branch of MND

 

Isle of Wight Branch Newsletter

Download the Spring 2017 issue here

 

MND Charter Adopted

Isle of Wight Council vote to adopt the MND Charter.

Charter team

On 18th January 2017 members of the Isle of Wight Branch attended a full Council meeting to request that the Isle of Wight Council vote to adopt the MND Charter. We are thrilled to say that Councillors voted unanimously to adopt the Charter.

 

This brings the IOW in line with other Councils along the south coast. Now that the Charter has been adopted, the Branch will work hard to develop and maintain links with those responsible for making decisions.

 

What a fantastic result! Full details here

 

 

ABSEILING DOWN THE SPINNAKER TOWER

Sunday 29th May 2016 - what a beautiful day to launch yourself off the side of the Spinnaker Tower.

Doreen Gant     Jacq Gant

Doreen Gant from the IOW branch of the MND Association and her eldest son Jacq were, at the second attempt, (March 27th cancelled due to bad weather) able to complete their abseil. For Doreen it was a bit of a scary experience and half way down she "wanted to get off" - so she decided to just speed it up a bit and get to the ground as soon as possible. For Jacq on the other hand, it was an exciting experience and he took a more leisurely approach to his descent.

 

Thank you to everyone who supported us and we are delighted to say that we have raised in excess of £900 for MND. (Dedicated to a wonderful Mum & Grandma).

 

Just Giving Donation Page