6 great ideas for workplace fundraising!

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

Corporate-Pledge

 

How are you?

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?”.

 

Trust Fundraising at SHA

This blog piece was written by our Trust and Grants Fundraiser Sarah Kernahan. Sarah has been working behind the scenes in the fundraising team for over 4 years so we asked her to share what she’s been doing to raise thousands of pounds year in year out for families living with HD.

When you mention fundraising people usually think about events, sponsored challenges and all the weird and wonderful things people do to raise money. People are less familiar with Trust Fundraising, which is my role within the fundraising team. … so what exactly is Trust Fundraising?

Trust Fundraising refers to the process of asking for support from trusts and foundations that are empowered to make grants for charitable purposes. There are around 10,000 trusts and foundations in the UK, all operating to distribute funds to charitable causes amounting to about £2 billion annually. That’s a big pot of money! These trusts are extremely varied, from individual or family-based trusts which were set up to reflect the founders interests, to the more well know trusts such as Comic Relief and Children in Need.

However with over 24,000 charities registered in Scotland alone, the competition for the same pot of money is huge! One of our biggest challenges when up against the competition is fundraising for a cause that people know little about or have never heard of.

How do we stand out from the crowd? 

Writing charitable trust applications is all about communicating who we are, what we do and why we exist. It’s about telling our story; demonstrating how HD impacts people’s lives and the practical things our HD Specialists, Youth Advisors and Financial Wellbeing Officers do on a daily basis that really make a difference to the people we support. Using case studies in applications brings these issues to life; a real story is the most powerful way to engage with someone who knows little about the condition.

One of the most recent successes with charitable trusts was securing funding for the next 3 years for our Financial Wellbeing Service (FWS). The FWS was set up following a 3 year grant from the Big Lottery Fund and as this funding was coming to an end in 2018 the challenge was to find continuation funding to keep the service going.

The funding secured for the Financial Wellbeing Service for the next 3 years came from three main funders; The Henry Smith Charity, The Robertson Trust and the R S Macdonald Trust. The Robertson Trust and the R S Macdonald Trust have both previously supported our work and we have a good relationship with them. Securing funding from ‘cold’ trusts is much more difficult, cold trusts are trusts that we do not have a connection with and have never supported us. On average just 10% of applications to cold trusts are successful. So how do we increase these odds?

In June this year we were successful in receiving support from the Henry Smith Charity, a cold trust, securing a total of £178,000 over 3 years. The Henry Smith Charity is amongst the largest independent grant makers in the UK, distributing over £30 million in 2017, so we were delighted to be able to secure this support!

Being able to demonstrate both the need for the service and the positive impact the FWS has had on the lives of people living with HD in its first 3 years of operation enabled us to secure this funding. The application included information from an independent evaluation which provided strong evidence of what the service has achieved for families;

To date the Financial Wellbeing Service has generated an additional £2,173,345 of income for individuals and families living with HD.

It’s clear the service has had a significant impact on clients’ wellbeing with 76% reporting reduced levels of financial stress. Clients could feel that the service enabled them to cope more easily with day to day tasks, and had a positive impact on their mental health.

Being able to demonstrate the difference we make to people’s lives is our biggest strength. ‘The application made a good case for the need for this specific service and explained the challenges faced by your clients well’ Feedback received from The Henry Smith Charity.

The principles of trust fundraising are the same as community and individual fundraising – it is about engaging your audience, inspiring them and demonstrating that your cause is a worthy one.

Could you help to improve our funding applications?

It would be fantastic to be able to use more case studies within our funding applications. If you would be willing to share your story and experiences of using SHA’s services then please do get in touch.

Could you live on £2 per day?

It doesn’t sound like much, does it? In fact, a cup of coffee from Starbucks costs more. But that’s the amount that people living below the poverty line in Scotland have to feed themselves, day in and day out. One million people in Scotland were considered to be living in poverty in 2017. As 33% of HD families in Scotland are in poverty, that means that hundreds of men, women and children are also living like this.

Like many people, I knew that Huntington’s disease had an economic impact on families, but didn’t think about it too deeply. I knew that the Financial Wellbeing Service  was doing great work, and that it was making a difference, but it was all a bit hypothetical for me. Then in January 2018 I saw a newspaper article which mentioned the £2 per day figure. I was sitting in a café at the time, with a jacket potato and a hot chocolate in front of me. I’d just spent £6 on my lunch, without really thinking about it. Suddenly, it all felt very real.

It was after  that I decided to try and see what I could make for that kind of money. The first thing I realised, of course, is that if I was living below the poverty line I wouldn’t have a full £2 to spend just on dinner – I’d need some of that money for other things. However, after a bit of research, I discovered that a big bag of porridge oats from Tesco costs just 70p and provides breakfast for multiple people for a week. Thank you, porridge! Assuming that meant I was only spending 5p per day on a filling breakfast, that left me with 90p per person for lunch and £1 per person for dinner.

This was going to be difficult, but possible. Of course, trying to feed myself and my husband on this kind of budget wasn’t just going to cost me cash. It was also going to cost me a lot more in the way of emotional labour than usual. I couldn’t just sling together a collection of ingredients, hope for the best, and call for a takeout if it went wrong. Instead I had to be very creative with very little, and I had to get it right first time. If you’re on this kind of budget, you have no safety net – if you burn your dinner, that means you go hungry.

Checking out prices in the supermarket, it also looked like I probably needed to go veggie for the week. Meat is not cheap! I did remember that as a poor student the only meat I could afford was a tin of cheap hot dogs, but to my shock, even those were 85p for a can of eight! I managed to shop around and find a replacement tin of hot dogs for 50p, but that would still be half my budget for this meal and I didn’t think those hot dogs would taste great by themselves. I sadly put them back down.

It also occurred to me as I was wandering around the supermarket that I was also pretty lucky to live in Glasgow, with a big Tesco within walking distance, which has a wide range of options at a reasonable price. If I was living in the village I was brought up in, I wouldn’t have access to any supermarkets, only a corner shop with a limited number of food options, and higher prices. Getting to a supermarket would cost me money in bus fares, which would eat into my limited funds.

But back to dinner! After some thought, I decided to go for egg fried rice and vegetables for the evening. For that, I needed half an onion (5p), 100g rice (10p), half a cabbage (10p), 1 carrot (5p), 1 egg (18p – a box of 8 eggs cost £1.40 and I’d use the rest later!), and a stock cube which I had in my cupboard already, but would have cost me only 5p or so (a box of 12 stock cubes costs about 70p). I also needed a spoonful of oil and a pinch of salt – probably another 10p worth of food. That all added up to 63 pence for a meal for two people.

I fried the veg first, starting with the onion and carrots for about five minutes or so, and then added the cabbage for another two minutes. Once my veg was looking soft, I chucked in the rice and stock cube, letting that heat up over the next two minutes. While that was cooking, I whisked the egg and then added that to the pan for a minute more, stirring constantly while I did so. When it was done, I seasoned with a bit of salt.

It didn’t taste too bad. Dinner for two, for under 35p per person.

The next day, I calculated how much I would normally spend on dinner and was shocked to discover that my dinner the night before (fish, mash and veg) had cost me nearly £3 per person. I’d spent almost ten times as much on my dinner as someone living below the poverty line in Scotland might.

I made a donation to SHA that week and decided to spend the rest of the week trying to cook for less, and appreciated the Financial Wellbeing Service a bit more. Of course, when you’re living in poverty, it isn’t just food that’s a worry – it’s bus fares, new shoes, or paying the gas bill – and the Financial Wellbeing Service can help with all of that as well.

Scottish Huntington’s Association provides financial advice and support to HD families completely free of charge but it costs the charity money to keep the service going. My week of living carefully, however, had given me an idea.

You may have already heard of some of these challenges – the Live Below the Line Challenge or the Hunger Challenge. I wanted to encourage SHA supporters to do something similar – to try and live on a limited budget for a week, and think a bit about the economic hardship which is an often underestimated impact of HD. But I didn’t just want to raise awareness. I wanted to make a difference.

My week of tight budgeting had meant that I had the money to donate to SHA, and the money to make a difference through my donation. I know that those small donations add up – for every person who makes the commitment to live frugally for a week and is able to donate £40 as a result, our Financial Wellbeing Advisors can afford to visit a new family and help them with their finances. And when our Advisors get involved, they can normally leave every family they work with better off to the tune of an average £3,000.

That’s when I got the idea for the Poverty Pledge. Find out more on our website if you fancy.

https://hdscotland.org/poverty-pledge/

Tatties @ 3°

This blog submission comes straight from the SHA Office in Grampian. Big thank you to Paula Hepburn for writing and Liz Fraser for input. It’s a great piece where they talk about some of the joy that comes from working with our HD community and the fun they had going to the Tatty Barn Dance organised by fantastic fundraiser Fiona Grey.

People are amazing, that’s the conclusion we’ve come to in our office!

We all have ups and downs in life, some more than others, and within the realm of our work we come across the best of people in often the worst of times.  Our small team deals with folks from all walks of life that have the common thread of HD running through their family histories, but there’s always a smile or resilience that shines through as they deal with life as they know it.  Often it can be the smallest detail that triggers a memory or begins a spontaneous story to share which ends in laughter, and it’s those moments of laughter that help to keep going.

There was much laughter in our office recently when we were invited to a charity event organised by one of our HD families.  It was called a ‘Tattie Dance’ – some of us weren’t sure exactly what it entailed but it promised to be a great night with DJ, raffle and stovies.   The location was quite remote as it was out of town and the drive took us through some amazing scenery (isn’t Scotland beautiful?!).  We eventually arrived at the venue which was a huge barn on a local farm, and when we entered it was already busy with an excited atmosphere.  There were around 200 people and judging by the refreshments on the tables they were all determined to have a good time!  There were lots of opportunities for folks to give their support with games being played and raffle tickets sold with many prizes, including a toy tractor which produced lots of hilarity when a burly farmer won it!  Everyone joined in the goodwill of the evening and it was really heartening to see a small community pull together to support SHA.

As the evening went on the music got louder and folks were strutting their stuff on the dance floor, it was a great space for the shindig.  We asked what the barn was usually used for as it had massive coolers at one end….of course, it was the tattie shed, used for storing the crop of tatties at 3 degrees!

Comfort to Kathmandu …

This blog was written by SHA Community Fundraiser Linda Winters on her experience of doing an overseas trek for charity. If you are thinking about doing an overseas trek why not join us on the Great Wall Discovery Challenge in 2019 or speak to us about organising your own.

As a fundraiser, I get to meet some incredible people, doing great things to change their community and improve lives.

One ordinary day at the office, that phone call happened. A fundraiser who also happened to be a family member and Trustee called to ask for some fundraising materials and tell us she is embarking on an overseas trek of the Himalayas later that year. I was immediately impressed by her ambitious spirit, but then I was pulled in…

I had intended at some stage in my life to do something adventurous for charity after bringing up my kids.  Now could be my chance, after I said this sounds amazing, Marie asked ‘why don’t you join us’?! Arrrgh, ‘okay I will,’ the quickest decision I had ever made – well nearly!

One telephone call later and I was booked up as a Volunteer Fundraiser to trek the Himalayas with Marie and her friend but it was the amazing causes that really did it.

Arriving in Kathmandu was an experience of a life time; it felt like we had landed on a movie set. Our guide for the trek collected us at the airport and took us to our hotel and ran through the next 14 days itinerary.  I sat there so excited with the realisation of what I had signed up to do.

The trek was a life changing experience; even partially conquering my fear of heights as I crossed the squinty, shaky bridge with missing planks.

The daily walks were surrounded by breath taking views of the snow topped Himalaya mountain range and meeting people from around the world heading in different directions. For 8 days we walked for about 5-7 hours per day, reaching Poonhill on day 8 at 3,210 metres. Regular stops for drinks and food were well organised. The local people were so friendly and at no time did I ever feel unsafe. Although we didn’t speak the same language we managed to communicate. Our accommodation was far from deluxe but gave us everything we needed, food, bed, and occasionally shower facilities.  It was humbling to see how other cultures live and in many ways, are less stressed with fewer material possessions.

We witnessed many villages that had been washed away by the monsoon with lots of lives lost and bodies never found under the rubble. Whole families destroyed in the landslides – it was sad to see. I did wonder to myself what services were available for people who had lost loved ones and how they coped. The communities really worked together and made the most of what was available to them and acceptance was maybe part of it.

Anyone taking on an overseas trip, be prepared for different emotions, everyone on your trip will feel the same and you can all support each other.  The biggest emotion will be the feeling of achievement and knowing that you did something for others. Planning for your trip is important and the charity you are supporting will be delighted to help with this.

I raised over £2,000 for Scottish Huntington’s Association and Diabetes UK Scotland. I would also say, if you are considering embarking on an overseas trip ‘do it’ go with no expectations and you will have an experience of a lifetime. Just think, doing something so life changing but helping others.  The feeling couldn’t really get any better!!!

Takeaways from the Carers Conference

Maureen Waddell is an HD carer who receives support from SHA. 2018 was her first time at the carers conference and here she shares her impression of the trip and her top takeaways.

 

I decided to attend the Carer’s conference for a number of reasons but primarily so that I could meet others in a similar situation and so that my husband would perhaps gain a better understanding of the complexities of the condition.  The benefits of attending the conference were so much more.

On the lead up to the carer’s conference, I started to worry about putting myself into a room full of strangers but I have to say that even from the moment I arrived at the hotel (stressed out with road accidents, not being able to find the car park), people were friendly and welcoming.

I decided to go to the mindfulness session as what was there to lose?  I was sitting on my own at first as I really didn’t know anyone else there.  It was not long before everyone was chatting and I felt that I could take part in the conversation.  The mindfulness session was definitely the start of the theme of the conference – as a carer it is important to look after ourselves too.  This is something that first time around I never did and have vowed to make sure that I take time for myself this time around.  I am not always successful at this but try to ensure that it happens.

Arriving for dinner with my husband, I was unsure where to sit as I really am not the best at socialising.  We decided to sit at a table on our own but were soon joined by people I had spoken to at the mindfulness session.  Before long our table was full.  Throughout the meal there was lots of conversation and definitely at this point I really felt so overwhelmed by that fact that we were not alone in this journey.  My husband sat listening to what everyone was saying.  These people we had just met could have been telling our story – they weren’t, they were telling their own.  This for me was amazing as my husband could understand that it was not just us who were going through this, that issues in our daily life were also being experienced by others, it was not just me who picks and chooses the arguments I have with not only a person with Huntington’s but also a teenager!  We went to bed that night a little lighter and slept the best I had done in a while.

The next day was a very busy day.  On arrival at the conference and true to form I saw that a few tables had people at them but decided to sit on my own (must learn to be more inclusive).  I found myself talking to people that I had never met (a big thing for me) and before long I found the table I was sitting at filling up.  We had lots of chatter throughout the morning and I found myself thinking what a great opportunity this was for me.  As I was listening to the chairperson of SHA I could feel myself relating to a lot of the things she spoke about – how her mum was both challenging and fun, how she knew of no limits to doing what she wanted.  I found myself laughing along and thinking – yeah I have been there and I am also now there again, having a teenager who really doesn’t do the word “can’t”.  She reinforced my thought that if my daughter wants to do things that at first seem impossible, I should look at all the options first before dismissing it.  We then had a neuropsychologist speak to us about how we should look after ourselves as we will be useless to others if we are not looked after – definite theme running.

When I looked at the programme of events the next speaker was not something that I had ever heard of – Laughter workshop.  I really didn’t have a clue and thought it was going to be something like a stand up comedy routine.  How wrong I was.  This woman started telling us about the theory behind laughter being the best medicine.  OMG her laugh was something else.  I don’t know whether I was laughing with her or at her but I definitely laughed.  I was also laughing at others in the room who were in various states of laughter.  One member even had to leave the room.  This is definitely where I lost it.  The lady then had us interacting with each other, laughing exercises.  I have never experienced anything like it.  I will never forget counting from 1 to 5 and back again laughing at certain numbers (I came home and showed both my daughter and my husband what we were doing – I don’t think they will ever see me as sane ever again).  We had to mix cocktails of laughter and also go around high fiving everyone whilst laughing.  Anyone walking in on us would have wondered what they walked in on.  At the end of the session the lady explained that every morning before getting up she lies in bed with her eyes closed and laughs out loud for 10 minutes.  We had to do this for 1 minute and that seemed like an eternity.  I can’t imagine lying in bed laughing out loud anytime soon but her session really did make me laugh.

The afternoon session saw various exhibits showing the importance of fire safety, equipment available that may be needed in the future, information about the carer’s forum.  I particularly found the section on the equipment available to help with HD patients’ speech particularly useful as with my first husband the frustration he felt at not being understood by others was a particularly hard thing to watch.  Technological advances in this area for me, I feel will be so good going forward.  Never complain about someone talking too much – I value all the times my daughter speaks to me (less so in the middle of the night!).

On summary, for me I am so glad I forced myself out of my comfort zone and went along to the carer’s conference.  I think at the end I was so busy chatting that I was one of the last to leave   I have taken away so many positives:

  1. Look after myself as well as my daughter
  2. Laughter really is the best medicine
  3. There is hope for the future
  4. You are not the only one doing this journey

Mostly the thing I have taken from the conference is the friendships I have gained.

I can’t wait for the next conference.  Roll on October for the family conference.

 

SHAYP Outsider

Note: This blog was written by SHA Fundraising Officer Gemma Powell. She writes about the opportunity she was given to go to SHAyp’s 8-12 residential trip and what it was like seeing the youth service from an outsider’s point of view.

“Close your eyes and put out your hand!”

“Why?”

“Because, just do it,”

“Ehhh … okay?”

I was on a bus surrounded by 13 sugar buzzed and excited children I’d never met before waiting to set off for this year’s SHAyp 8-12 residential camp. When I’d first been asked to help out, I’d enthusiastically agreed. In that moment, as this child makes a very suspicious request and the rest are looking at me like, “Who even are you,” I’ll admit I was worried. Scratch that in fact, I was terrified!

However, I arrived at camp with a pocket full of sweets (that’s why I was to close my eyes), and new ‘friends.’ My enthusiasm had returned with gusto. The camp itself only lasts three days (2 nights) but in a good way it felt both longer and shorter.

After a quick lunch the kids are straight into activities. I’m with the girls so it’s climbing challenges. There’s lots of laughter, weird animal noises (no animals around by the way!) and a constant stream of encouragement from those on the ground for those mid climb – nobody really did it on their own! This set the tone for the whole trip.
Already the different personalities are really apparent and it’s so interesting to watching how they approach everything differently from the activities, to meal times, to bed times. The trip passed in a whirlwind keeping busy with activities from water walkerz, survival skills, lazer quest and climbing. I’m not complaining, but I did feel like I was being picked on during lazer quest just a bit!

On the Tuesday morning the youth workers, Pete, Grant and David, led a group work session where the topic was Huntington’s disease (after all that cruel disease is the common denominator). I know what you’re thinking! How do you get a bunch of hyper kids to sit and listen to information on such a serious topic for a whole morning? And to tell the truth, they didn’t! There was a quiz, a video, lots of running about during seemingly daft activities but which all ultimately led to learning about HD. You really have to admire the creativity of a youth worker!

As a fundraiser when I write about the youth residential, I always say something like, “The camp is a chance for the children to meet other children from HD families, learn more about HD and of course have fun as well.” And it does that. But it also does so much more. I’ve never been so aware of the value of the youth service and the role they play in these young people’s lives. They are a trusted adult who they can confide in, the adult that is always looking out for them, that is always willing to listen, and that is also willing to have fun with them. I learned on this experience that no matter their home life and their own personalities kids are kids at the end of the day.

Now as a fundraiser I might say something like, “The camp is a chance for the kids to take part in various activities which help them grow their confidence and resilience, let go of stress and responsibility, and most importantly have fun! It’s a chance for the kids to be kids.”

 

Introducing the Glasgow & Clyde area team

The Glasgow & Clyde Area Team offer support, advice and information to individuals and families who live with Huntington’s Disease. We each have our own skills and experiences developed over time from our personal and professional backgrounds.

We would like to take this opportunity to introduce ourselves and for the purpose of this blog each member will be discussed by the other team members.

Last in first up….Claudia Lang.

Claudia joined the SHA in August 2017; she has extensive social work experience. She has settled well into the organisation in a short period of time and integrates well within the team. Claudia is very much into the process of meeting families and building on her role as HD Specialist. One of Claudia’s qualities is her ability to resist sweets, chocolates and biscuits unlike her colleagues. We value her calm and assuring presence which most certainly complements other characteristics within the team. Claudia’s skills extend to the kitchen. She has yet to prove herself as a chef to her team colleagues however we will welcome our invite for a nosh up!! That is if she gets time since she is also the proud keeper of hens – maybe we’ll get to sample the eggs with our meal! Welcome Claudia to the SHA and our Team.

Next up Jessica Muscatt.

Jess is from an Occupational Therapy background and moved from South England to join the SHA in January 2017. She is now very much acclimatised in her role as HD Specialist. Jess is the bubbly one in the team; we value her ambition to work to a high standard no matter what aspect of her role she is undertaking. Unfortunately her ability to master the ‘Glesga’ patter has a long way to go, but it will, however, occupy her time while she is waiting for summer!! Jess has a keen interest in a choir but thankfully she doesn’t expose her colleagues to her vocals in the office.
Gillian Blair joined the service in December 2015. Gillian comes from a nursing background with particular interest in Palliative Care. We value Gillian’s eclectic interests ranging from Game of Thrones, bling & fashion to World Wrestling Entertainment. Who would have thought that someone so feminine would be so physical and vocal when watching live wrestling. Gillian brings so much fun, laughter, drama and experience into every day and we never know what the day will bring. We do know however that her commitment to her work and all the people she comes into contact with is always of the highest level. Gillian leaves no stone unturned, if it can be done rest assured Gillian will do it.

Sally Woolvine joined the service in November 2013 as team manager and Senior HD Specialist. Sally comes from a Social Work and Palliative Care background and moved to Scotland from North West England and like Jessica has had to adapt to the Scottish “culture” as well as getting to grips with a new job which she has done extremely well. Sally’s best friend is her sat-nav! (she’s the first to admit she has no sense of direction on the roads). We all value how Sally leads and motivates the team. She is very generous with her time and support. She nurtures our strengths and gives us good advice at all times to assist us in supporting families. Sally has had a pivotal role in developing self-confidence and competence in the team. In January 2017 Sally became a super proud grandmother of the most beautiful baby boy, Loughlan. In her spare time Sally enjoys dangerous pursuits such as wild rides on the motorbike and diving in exotic locations.

Anita is our Admin Resource Worker. She joined the service in November 2000 when John Eden was just a fledgling! She has seen the SHA grow significantly over the years and has worked through many changes. She has seen the SHA go from strength to strength. Anita is the oracle of our local team and her ability to recall information is astonishing at times and worrying at others. Anita provides a sense of stability in the team. She is often faced with problems, emotions and a range of people’s day to day experiences from staff and families who contact the service yet she always manages to offer support, advice and a listening ear. Anita runs a tight ship in the office, the team are well aware of what they can or cannot get away with. But more importantly Anita nourishes our emotional wellbeing with her supply of comfort and treats. She is the queen of high teas and cocktails. It is very reassuring for the team to have Anita here as our anchor to help us manage our day to day activities and we would struggle without her.

We hope this provides a sense of who we are as individuals but more importantly that as a Team we recognise and value each other’s strengths and diversity. The Team share a mutual sense of respect and inspiration in the work we do with families. We value the privilege given to us by families to be involved in their lives and we are all looking forward to a hopeful future in the world of HD.

World Book Day: Watching their Dance

Therese Crutcher-Marin is the author of Watching Their Dance, a true to life novel about living in a family with Huntington’s disease. Therese has kindle offered to donate profits from this book sold in Scotland to Scottish Huntington’s Association (SHA). You can download the book here:  http://goo.gl/7LJ8fp

Also on sale with profits going to SHA this World Book day is ‘50 Percent’ the novel by our very own Chief Executive John Eden. You can download this here: http://goo.gl/R5hLiN

Some words from Therese,

I once read, “If you have one true friend in your lifetime, you are lucky”. With that said, I have been extraordinarily lucky! When I met John in 1976 and we became a couple, I quickly learned that being with him meant having his three older sisters in my life as well. The four siblings had had a difficult upbringing and were exceptionally close and I was thrilled when they welcomed me into their circle.

Like their brother, Lora, Marcia and Cindy were kind, positive, unselfish individuals and I became closer to them than I was to my own sisters. Through the years, I would count my blessings for the loving relationship the three sisters and I shared, as they became tried and true friends. These brave, gentle souls would inspire and teach me many lessons that would enrich my life.

When the sisters discovered the Marin family secret in 1978, their mother had Huntington’s disease, I struggled with my commitment to John, broke off our engagement and walked away from the four of them. But, after much soul searching, and deciding life was too short to walk away from the man I loved, John and his sisters welcomed me back with loving arms. John and I married in 1980.

Thus began our journey into the uncharted world of living AT RISK for Huntington’s disease. Though we didn’t speak about living in the shadow of Huntington’s, I acknowledged the possible consequences of my decision to marry into a family where four individuals had a 50/50 chance of inheriting the mutated Huntington gene.

In my mind, based on statistics, this inherited neurological disease with horrible odds, translated into the fact that probably two of the four Marin’s would eventually show symptoms of the disease. It was a coin toss that we all tried to ignore.

Through the years, John and I shared many good times with his sisters playing softball, having barbecues and parties, camping, taking vacations together, and just hanging out at Lora’s house in Citrus Heights.

Unfortunately, in 1984, Huntington’s began its attack on the Marin women. Lora was the first to fall prey to HD with severe, deep depression that led her to self-medicate with alcohol, and she was stolen from us at age 41 in 1989. Marcia was diagnosed in 1986 after a terrible car accident that seemed to trigger and exacerbate HD symptoms and she died at age 49 in 1999. Cindy, who we thought was free from the disease, began showing symptoms at age 41 and died at age 54 in 2008. Because of our close relationship, all three sisters lived with John and I at particularly hard times in their lives and I cared for Marcia for many years until I needed to return to fulltime work.

John and I miss them terribly and we wish we could have grown old together, celebrating birthdays and the holidays together and sitting on the deck at our cabin in Lake Tahoe sipping wine and watching the sunset. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

I have published a memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s” to accomplish several goals. My hope is that the book will heighten HD/JHD awareness, as it will be promoted around the world.

To learn more about Therese, please see her Author Website: www.theresecrutchermarin.com