Author: David McNiven

To mark the occasion of Scottish Huntington’s Association turning 30 in 2019 we’re aiming to get 30 companies to sign up and support us! We’re doing this because we need to protect the services that are making such a difference to the HD community and build a better HD Scotland for a future where everyone has equal access to a high quality level of support. No one should be alone in facing the complex challenges of HD.

Here are some great ideas of ways your workplace or business could support SHA in 2019!

Nominate us for charity of the year!

Elaine Mackenzie from Graham Environmental Service did this for the year 2017 and what followed was incredible. We were chosen as one of three charities and received a donation of £8000 from a whole series of activities throughout the year including golf days, pop up charity shops, balls, quizzes and more! Does your work have a charity of the year (or month?) scheme? #support

 Organise a cyclethon in the office!

The charity committee at Tepnel pharma services organised a cyclethon in 2016 with phenomenal results! Not only did their whole staff team get engaged by taking part, sponsoring or cheerleading but they raised over £2000! They had great support from a local gym who provided the bikes and then the fab cyclers dedicated time at the end of each day over a week to reach their set distance between them! . You could organise something similar and involve all your colleagues.  This would be great team building with loads of fun, never mind improving your health and wellbeing.  #cyclethedistanceonthespot #dedication

Round up a team to take part in a sponsored event!

The fantastic four from Blackadders LLP Dundee office teamed up to take on the Edinburgh Marathon last year. Doing it together meant they could keep each other motivated for both training and fundraising – a bit of healthy competition goes a long way! It was also a great way to support their colleague by showing they really cared! #teamwork

Ask your employer about match funding!

Virgin London Marathon participants asked their employers to match fund their fundraising and increased their amazing efforts by over £3,000. It is always worth asking your employer if they support their employees fundraising efforts.  We are happy to post about, employer and employees support, gaining recognition for all involved.  #amazingemployers

Host a SHAre tea for HD Party!

Who can resist a cuppa and a cake?!  Planning a tea party can be done anywhere, home, school, university, work or on the street.  One of our nursing homes who support our work, held a tea party in their café and brought carers and their loved ones together with kids and grandkids taking part too…Great fun for all generations and bring people together in an informal and relaxed way. Start the chat today and organise a SHAre tea for HD tea party and find out more about people you care about, all the while supporting an incredible cause. #startthechat

Organise a raffle and/or tombola!

A large financial business used a Friday morning to organise tombola and staff from all departments queued up to take their chance on winning some of the amazing prizes on offer. This took up less than an hour of staff time, raising £350 of which the employer matched funded £350 making an incredible total of £700. Not too much time was taken up but an incredible outcome for cause and helping to improve staff motivation and moral by doing something for others.  #feelproud

Kirsten Walker is the Senior Specialist Youth Advisor for Scottish Huntington’s Association, who has had the privilege of working with families impacted by HD for 10 years.

“How are you?”…….“How’s things?”…….. “What have you been up to?”

These are all simple phrases we use in our everyday lives and often we don’t even think twice about them. They are greetings and check-ins we use with our family, friends, colleagues, neighbours-Sometimes out of politeness, sometimes to actually start an in-depth conversation with someone.  What response someone chooses to give to these questions, very much depends upon the person, but at least the question has been asked and the opportunity provided.

Due to the nature of HD, often the person who is symptomatic  becomes the focus of the family. Sadly, this can often result in children and young people’s (and carer’s) needs being inadvertently overlooked. For children and young people living in families impacted by Huntington’s disease there is often so much else occurring within the family:  non affected parent has caring responsibilities; mood, mind and movement symptoms of person with HD; appointments; work; school; clubs and activities; housework; to name but a few of the stressors faced in everyday life, that asking a child how they are can often be missed.

I was visiting with a young person last week and he informed me that he was having a hard time. When we chatted further about this it became apparent that for 3 months, no-one within his family had looked at him and said “How was your day”, “How are you?”, “What happened today?”.  When he returned from school, he immediately started caring and his family took the opportunity to get on with other tasks. This young man was feeling that his family didn’t care for him. I have no doubt that his family love him and care for him, as he knows deep down, however there was a connection missing with his family. He felt left out, missed, forgotten about, not cared about.

To improve things for our children living in families impacted by HD there is one simple technique we can all adopt: –

“How are you?”

Allow the child time to respond. If they give the answer “fine” (as many young people do) change the question to “what did you do today”. These simple questions reaffirm to children that you love and care for them, are interested in them and provide them with the opportunity to discuss how they are feeling.

As parents, we can often try to protect our children by shielding them from the truth, however openly communicating with children, at an age appropriate level, has been shown to be of benefit to children.  “How are you” is one method of open communication.

We may not be able to change the prognosis of HD, however adopting “how are you?” into our daily life, can dramatically change how a young person copes with HD in their family.  Therefore to all parents, family members, neighbours, professionals please ask the question. You may not see the benefit of it, but trust me SHAYP staff can see first-hand how these three little words make the biggest impact in a child’s life!

So, to all who have taken the time to red this blog “How are you?”.