Shout Huntington’s Aloud

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?”.

 

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.