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Holiday boost for Huntington’s disease awareness

HD

Ferry operator CalMac is helping one Barrhead family improve understanding of a devastating degenerative brain disorder across the Western Isles.

Competition winners Jim Bavin and his wife Susanne have won a fourteen day Island Rover ticket donated by the company to the Paisley Scottish Huntington’s Association (SHA), the only charity in the country supporting families living with Huntington’s disease (HD).

HD

The Island Rover ticket gives the Bavin’s unlimited travel across the CalMac network during their trip.

I’m really looking forward to experiencing CalMac’s award winning service to take in some of the most spectacular scenery in the country.

We haven’t yet decided what route we’ll be taking, but that’s the beauty of the Rover ticket you have the flexibility to decide where you are going based on how you feel or just follow the weather,” said Jim.

Wherever we land up we will be sure to spread the word to increase understand of HD.”

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.

I’d like to thank CalMac for their kindness in donating this prize and look forward to building a long relationship with them. HD is no observer of geography, we support clients along the west coast and rely like everyone else on the 

lifeline services they provide,” said SHA’s chief executive, John Eden.

Jim has promised to post social media updates of his trip and of his HD awareness raising activity wherever he goes.

CalMac has been serving communities up and and down the western Isles across 49 routes for the past 160 years and is the UK’s largest ferry company. Company marketing manager Peter Griffiths said:

We are an integral part of the communities we serve and are committed to helping them thrive. I’m looking forward to reading about and sharing Jim’s experiences of some of the 27 destinations we sail to we are delighted to be able to help highlight this devastating disease and the impact it has on families affected.”

Caption: Picture shows: Jim and Susanne picking up their prize from CalMac marketing manager Peter Griffiths at the SHA’s Paisley office.

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Celebrate ‘Burns Night’ at the Glynhill

Gordons been fired

Celebrate Burns Night at the  Glynhill Hotel, Renfrew  

Friday  23th January 6.30pm 9pm

 

The Red-Hot Firewalk Challenge .

To make this event a success and to help us raise vital funds for people affected by Huntington’s disease, their families and carers, we need you to register and take part.

This exciting fundraising event will be held at the Glynhill Hotel, Renfrew (www.glynhill.com).

A firewalk is inspirational and empowering.  It is, as the name suggests, a barefoot walk over 10 feet of red-hot wood embers measuring around 1236 degrees fahrenheit.  No tricks. No special effects.  Just you and the fire…

Gordons been fired

By taking part, not only will you be ‘celebrating Burns Night in style’ but all money raised will benefit families affected by Huntington’s disease across Scotland.    We need to raise vital funds in order to ensure we can continue to support people living with Huntington’s disease, their families and carers.

 

Scottish Huntington’s Association is the only organisation in Scotland providing dedicated HD specialist services in the community for people affected by HD, their families and carers.  The services we provide are a lifeline for those devastated by this condition.

 

So if you have a burning desire to take part, please call me on 0141 848 0308 or email linda.byars@hdscotland.org to register and receive a fundraising pack.  All we ask is that you pay a part sponsorship donation of £30 and commit to raising a further minimum sponsorship of £100.

 

This is the difference your funds will make:

 

  • £3 pays for a 5 minute call that can change a life
  • £6 buys a handbook for carers, giving them the advice they need.
  • £30 pays for a home visit to someone affected by Huntington’s disease.
  • £465 pays for a residential summer camp for one young person affected by Huntington’s disease.

Event Format:

6.30pm                   Arrival / Registration          Glynhill, Renfrew

7pm                            Training Session                    Function Suite

8pm                           Firewalk                                     Private Car park

9pm                         Back to function suite, for certificates, celebrations, raffle, tea and coffee

To see what a Firewalk is really like, you can view photographs and comments from our previous Firewalk on our Facebook page (Scottish Huntington’s Association).