Tuesday, 12 December 2017

The Brain Tumour Charity





'I hate brain cancer because it steals away memories, personalities and abilities before finally stealing life'

Amanda Haddock


Watching my mum die slowly from ovarian cancer - heartbreaking. But, I was able to fully connect with mum right to the end for which I am grateful. If faced with a terminal Brain Tumour diagnosis, my fear would be that I might lose the person long before they die. Who can predict the parts of the brain which might be affected; the connections which might be lost?

Sadly, several of my friends have first hand experience of the effect a brain tumour can have on the whole family.

The statistics


More children and adults under the age of 40 die from brain tumours than any other cancer. In over 40 years the ten year survival rates for brain tumours has improved little for adults and stands at just 13%. Despite these facts, less than 2% of the £500million invested in cancer research in the UK every year is spent on brain tumours.

Symptoms of a Brain Tumour


Around 10,600 people in the UK are diagnosed with a brain tumour each year. Raised pressure in the skull can cause headaches, seizures, changes in vision, nausea and tiredness. Symptoms in children are often slightly different to those in adults. They can include persistent vomiting, recurring headaches, abnormal eye movements, seizures, behaviour change, abnormal balance/walking/coordination, blurred/double vision or abnormal head position.

Living with a Brain Tumour


The primary care role of someone with a brain tumour will often fall onto the shoulders of already emotionally exhausted family members. Potential side effects of having a brain tumour can include personality changes; difficulties with memory or communication; fatigue and depression. A person's independence can be curbed as they may be required to surrender their driving license and may not be able to secure travel insurance needed to travel abroad.

The Brain Tumour Charity


The Brain Tumour Charity has a five year UK strategy to drive change in improving the future for those affected by a brain tumour with two over-riding goals. These are to double the survival rates within 10 years and to halve the harm that brain tumours have on quality of life.

If you would like to support the work of The Brain Tumour Charity as part of the fortycubed fundraising challenge you can so do via this link.

Tuesday, 21 November 2017

Hemihelp






Sometimes it can feel that charity donations get lost in a mass of administrative fees and large projects but when my daughter and her friends raised £90 for Hemihelp a couple of years ago, the personal response from the charity demonstrated how grateful they were and how much the funds were needed. In fact, since I chose Hemihelp as one of the 40 fortycubed charities they have had to reduce their paid staff members due to reduced funding.

What is Hemiplegia?

Hemiplegia is a lifelong condition caused by injury to the brain which can take place during pregnancy, at birth, in childhood and also in later life. It affects movement on one side of the body to a varying degree and can also cause other less visible effects such as epilepsy, specific learning difficulties, anxiety or challenging behaviour. Hemiplegia affects one person in every 1000.

Hemiplegia can affect the body, learning and emotions and yet the symptoms will often go unnoticed by the wider family and friends. This video link below gives a helpful overview of Hemiplegia.

What is HemiHelp?


HemiHelp was set up in 1990 by a small group of parents, and now has a thriving membership of families and professionals all over Britain. They provide information, support and events for children and adults with Hemiplegia, their families and the professionals who support them.

How can HemiHelp help?


Hemihelp runs a Helpline staffed by trained volunteers who all have personal experience of Hemiplegia. In addition to offering online and paper resources, the charity links members who have shared experiences and is developing a network of local groups. The charity runs regular conferences and workshops around the UK for both parents and professionals. There are also a number of sports and activity days organised for children in different regions and a transition support service for young adults including employment workshops, 1:1 support and work placements.

If you would like to support the work of Hemihelp please do so via this link.



Thursday, 16 November 2017

The Story So Far - 16 November 2017



 

Wow!



We have broken the £30,000 barrier - over 75% of the way to the fortycubed target!  Added to the whopping total raised at the Gala Dinner, there have been several donations this month and two fundraising events.


Botox in a Bottle Party


Two Forever Living consultants offered their time and expertise at a 'Botox in a Bottle' party raising money for the charity Headlines as we tried to remove some of our own head lines! Thanks to Clare and Rachel for the treatments, donations and to all those who supported the event. 







 

Freworks Fundraiser 


On 11 November, the Witney family treated a group of neighbours and friends to a fantastic fireworks display and provided a delicious meal in exchange for donations to Prostate Cancer UK.  Over £300 was raised at this event - thank you!





The 40 fortycubed charities


Friday, 3 November 2017

Headlines



Isaac's operation would change the way he looked forever and the charity Headlines had the tools his parents needed to prepare his siblings and themselves for this inevitable outcome.




Isaac was diagnosed with metopic synostosis shortly before his first birthday. He had been referred to see a doctor because he was growing more quickly than expected for his age. The doctor was unconcerned with his size. However, he was surprised by the shape of Isaac's head and referred him to a specialist at The John Radcliffe Hospital.

Rachel and John are Isaac's parents and both have a rare combination of personality traits. They are calm and relaxed but super efficient at the same time. Rachel was planning to take Isaac to the appointment by herself but from the moment she walked into the consultant's room, she was grateful that her mum had insisted on accompanying her. Alongside the consultant were 7 other specialists taking notes and ready to offer their opinions on Isaac's condition.


What is Metopic Synostosis?




  • The metopic suture­—the joint that runs from the baby’s fontanel (the “soft spot” at the top of the head) down the forehead to the top of his/her nose­—closes too early.
  • The baby develops a noticeable ridge extending along the center of the forehead.
  • The forehead will look overly narrow.
  • His/her eyes may be spaced too closely together.
  • The front of the skull may appear pointed and rather “triangular.”

Some children have very mild cases of metopic synostosis that do not require specific treatment. In more serious cases, however, the condition can cause:

  • developmental delays
  • learning and behavioral problems
  • vision problems

Isaac was sent for a CT scan to ascertain if an operation would be needed. If his brain was in a healthy, round shape and had room to grow, an operation would not be necessary. However, Isaac's brain was already being pulled out of shape. The consultant left Rachel and John to make the final decision about surgery but advised them that he would have opted for the operation if Isaac had been his child. The best time to operate for the condition is between the ages of 9 and 18 months as by the age of 2 years old, the head is 80% fully grown. Isaac braved the operation at 15 months.





Headlines


A specialist nurse was assigned to the family and she introduced them to Headlines.



Headlines is a charitable organisation based in the UK which aims to provide support and help to all those affected by Craniosynostosis and associated conditions. Craniosynostosis is evident when one or more of the plates in the skull fuses, normally before birth, resulting in problems often requiring surgical intervention at a young age. Some conditions require ongoing surgical as well as other medical treatments into early adulthood.

Craniosynostosis affects 1 in 2000 births and up to 350 children are born with this condition in the UK every year.

Through Headlines, the nurse was able to offer support to Rachel, John and Isaac's 3 older siblings. She gave the children a special storybook which explained to them in age-appropriate language that Isaac would go down to theatre looking one way and come back looking very different. As the family faced sending their young son into theatre for major surgery to his head, this specialist nurse was a reassuring and comforting voice of experience.

The surgery was successful and the doctors are confident that Isaac will not need any further intervention. Rachel and John are well aware that this is not the case for all families and some children have to endure several rounds of surgery to address the problem. If the condition is not identified early enough, the damage caused can be irreversible.




For Isaac, the ordeal is over but for many others it is just beginning. This is why Headlines is on the list of the fortycubed charities and why I will be fundraising for Headlines over the coming year. If you would like to make a donation to support other families going through similar situations please do so via this link.

Friday, 20 October 2017

Fortycubed Charity Gala Dinner


All 40 fortycubed charities represented over 35 tables 

350 people ready to have fun and fundraise

 


A Silent Auction including 3 holidays, yacht sailing, a spa day and a wine cellar tour.






The fantastic total raised for charity at the Fortycubed Charity Gala Dinner was just over £19,500!





 

Thank you to all those who came, who hosted a table,  who helped with preparations, who sourced prizes, who donated prizes, who bid on the auction or bought a raffle ticket.  #youareawesome 











Tuesday, 10 October 2017

World Mental Health Day 2017 - Tuesday 10 October



A message from my sister


As World Mental Health day was on the horizon I thought it would be an appropriate time to write a few paragraphs for www.fortycubed.co.uk, to highlight and raise awareness of mental health and to remind me and the lovely friends and family who have agreed to do our bit for @fortycubed and raise our £1k for MIND, why this is so important.

When I made that plan I had no idea how poignant and relevant this post would be.  So sadly one of my son’s friends took his life on Saturday.  Even writing that today, less than 48 hours after my son told me, seems surreal.  He was 15. 

That stark information is so powerful and fits too neatly into the statistics.  We know men are more likely to complete suicide, we know the rates seem to be on the rise and we know it is often related to the turmoil that comes with mental ill health.  We also know we need to talk more and in the words of one mental health charity’s post in relation to male suicide – we need to stop manning up and find the strength to talk.    

However, there is often a reluctance within our society to demonstrate our vulnerability; how many of us have tried not to wipe our eyes in the dark of the cinema at a film designed to elicit emotion?  How many of us have apologised for tearing up, asking for a tissue, having to take a moment to compose ourselves?  How many of us have stopped short of telling someone close to us that we love them?  Or a friend how important they are and that you are glad they are in your life?   How many of us have said ‘don’t be silly’ or ‘there is no need for that’  when someone has started to cry or expressed anxiety?  How many of us have sent an emoji rather than saying the words in person?

I have no idea if this would have made a difference for my son’s friend.  And we have to accept we cannot change that, but we can hope that each time we talk and demonstrate our vulnerability as humans we open the door for others to talk; to feel understood, listened to and validated; to know they are not alone - and then be able to entertain that hope that things can be different.  They could even be good.

I am very proud to support MIND. 

Saturday, 7 October 2017

The story so far - 7 October 2017

Every single penny donation to the 40 fortycubed charities is much appreciated.  This evening a £20 donation to The Cystic Fibrosis Trust just tipped the running total over the £9,000 mark and I will be indulging in a cup of tea to celebrate!

Foreign Currency Drive


I am very grateful to everyone who donated their foreign currency over the last few months.  Thanks to a generous company profit matching scheme, our donations were doubled to a grand total of £1624.76 which is already being put to good use by The Ellen MacArthur Cancer Trust.

Prosecco Donation

We have had so many fabulous donations from companies for the auction and raffle at the forthcoming Gala Dinner.   However, I wanted to single out a donation from a family at my children's school.  They are unable to attend the event but wanted to contribute in another way and have donated 6 bottles of Prosecco to be used as raffle and game prizes.  There are now almost 350 tickets sold for this event!

 

Snapchat Geofilter and #fortycubed on Twitter


Thanks to having a teenager in the house, fortycubed has a geofilter set up for the night of the Charity Gala Dinner on 14th October at the De Vere Wokefield Estate.  If you are attending the event and don't have snapchat yet, please get the app and then find out what a geofilter is if you don't know already!

Please also look out for @fortycubed on Instagram and #fortycubed on Twitter as photos of all the charity tables will be tweeted by @fortycubed at the event.

 

 

 

The 40 fortycubed charities


Thursday, 5 October 2017

The Link Visiting Scheme



'The most terrible poverty is loneliness, and the feeling of being unloved'
Mother Teresa

The Link Visiting Scheme is on a mission!


This small charity helping local people has big plans for our community:
We aim to reduce loneliness, to promote friendship and to improve the health and well-being of our Link friends. We want to celebrate and honour older people in our community.
Loneliness and social isolation has become a huge problem in our nation and on a local level.  It can affect people of all ages, but perhaps the most vulnerable are our ageing population. It’s a growing epidemic – one that’s increasingly recognised as having dire physical, mental and emotional consequences. Loneliness can affect anyone but for older people it’s often associated with family members moving away or working long hours and close friends passing away. As one senior put it, ‘Your world dies before you do’

I first met Jo from The Link Visiting Scheme when our sons were at pre-school together.  Since then, her passion to celebrate and befriend older people in our community has inspired me to sign up as a volunteer.  I was 'matched' by the team to an older person with a view to us meeting up regularly.  The commitment is often just an hour or two per fortnight and in my experience, is great fun.  I have loved getting to know my Link friend and look forward to our trips to garden centres and cafes.  The Link Visiting Scheme is also looking for volunteer drivers to help link friends get to activities. 

The impact of loneliness


Loneliness and social isolation are harmful to our health.  Research shows that lacking social connections is as damaging to our health as smoking 15 cigarettes a day.   Networks and friendships also help individuals to recover when they do fall ill.  Loneliness increases the risk of heart disease, stroke, high blood pressure and the onset of disability.

Lonely people have a higher risk of developing dementia and are more prone to depression. 

 

Celebrating Celia and Sue


The Link Visiting Scheme proved their matchmaking skills when they brought Celia and Sue together.  Both ladies have shared a little of their story and the impact the scheme and their friendship has had on their lives.

 

Sue's Story


'After watching how isolated my Mum (she lived in Germany) became after my Dad's passing, I decided to attempt to make a difference in the life of an elderly person.  Loneliness can be worse than an illness, the cause of insecurity, anger and depression and so easy to stop by just giving a little of your time.
The Link Visiting Scheme introduced me to Celia just over 2 years ago. Celia already had a few Link friends before I came on the scene and the both of us had to get used to one another. With time, the trust grew and we went shopping, visited several garden centres and had organised coffee morning with mutual friends. We shared fun times and tough times, like hospital stays and the loss of friends.
It is lovely to see the smile on Celia's face when I enter her flat and to know that to this one person I make a difference by listening to her stories of the past, sharing her worries and offering reassurance and comfort and most of all by having a good laugh'

Celia's Story

'Before I joined the Link Visiting Scheme I was lonely and unhappy.  My husband hadn't long died and I had no-one to talk to.  I look forward to seeing Sue. We have a good chat. She is just lovely. When I am feeling down and lousy, she cheers me up. She always makes me feel better. I love the parties too, they are terrific. I always have a lovely time.'

Jo and Marje from The Link Visiting Scheme will be hosting a table for the charity at the forthcoming fortycubed Charity Gala Dinner.  If you would like to make a donation to the charity as part of the fortycubed campaign please follow this link.  To find out more about the charity and about volunteering opportunities please visit the website.






Monday, 2 October 2017

The Katie Haines Memorial Trust



The Katie Haines Memorial Trust exists because of a tragic accident.  On 18 February 2010, just two months after her wedding, Katie Haines died of accidental Carbon Monoxide (CO) poisoning at her home.

Later the same year, Katie's husband and parents founded The Katie Haines Memorial Trust to promote awareness of the dangers of carbon monoxide. 

The Vision

The vision of the Katie Haines Memorial Trust is 'that everyone in the UK understands the dangers of carbon monoxide and takes preventative measures to make sure that they do not fall victim to it, such as buying an audible alarm, having burning appliances checked regularly and taking an alarm when travelling abroad.'

Holiday Packing

I was aware we needed a working carbon monoxide alarm in our home for many years but until I heard about this campaign, I had never thought of taking an alarm with me when I travel.  Those sitting on The Katie Haines Memorial Trust table at the Fortycubed Charity Gala Dinner will get a CO alarm to take home with them.  I hope it becomes a regular part of their holiday packing list.



Zoe and Katie


It was through Zoe that I first heard about The Katie Haines Memorial Trust and she shared with me a little of their story.

'I first met Katie around late 2005/early 2006 through mutual friends, but it was only a year or so after this that we became close friends.

Katie was fun loving with an amazing smile that could light up a room when she walked in. She was a journalist for many years and was a press officer at Oxford University when she passed away. She had a love of sport – an avid Arsenal fan and played netball for Wokingham. 

I was lucky enough to attend her wedding on 12th December 2009. Katie and her husband Richard then had an amazing honeymoon in Brazil and Argentina. Shortly after returning from honeymoon Katie celebrated her 31st birthday on 31st January 2010. 

My husband and I were looking forward to hearing all about their adventure over a planned dinner date, but sadly this was never to happen. Katie’s life was tragically cut short on the evening of 18th February 2010 when she died of carbon monoxide poisoning.
Since then her family set up a charity and have been working so hard to raise awareness of carbon monoxide, to ensure everyone understands the dangers and has an audible alarm in their home. 

To find out more about the charity please visit the website and to make a donation as part of the fortycubed challenge please follow this link.

Thursday, 28 September 2017

The A21 Campaign



 

'Carve your name on hearts and not on marble' 

Charles Spurgeon



On the morning of 14th October, while I am in the final stages of preparation for the fortycubed Charity Gala Dinner, one of my heros and table hosts will be taking part in The A21 Campaign Walk for Freedom in London.  Christine will be joining a group of other 21st abolitionists as they walk single file in black shirts with yellow bandanas across their mouths.  

The A21 Campaign


Christine first heard about The A21 Campaign when she attended the Hillsong Colour Conference in London.  It is a non-profit organisation 'fueled by radical hope that human beings everywhere will be rescued from bondage and completely restored'.  The A21 Campaign is taking on a great global challenge.  To eliminate the illegal trade of human beings and exploitation (recruitment, control and use) of people for their bodies and their labour.  Through force, fraud and coercion people everywhere are being bought and sold against their will.

The statistics are shocking.
  • Millions of slaves worldwide today - more than at any other time in history
  • A $150 billion industry
  • 99% of victims are never rescued
  • Every 30 seconds another person is trafficked 
  • Types of trafficking include sex trafficking, forced labour, bonded labour, involuntary domestic servitude and child soldiers
  • Methods to recruit victims include false job advertisement, abduction, false immigration and some are sold by family or friends
  • Fastest growing criminal industry in the world



To reach, rescue and restore

 

At the heart of The A21 Campaign's approach is the focus on 'the one'.

'The one woman, the one man, the one child trapped and exploited, unable to see another end to their story. But we see the one, and we fight for the one, and we sacrifice to restore the one… to give them freedom and independence and the chance at a better story.'

The organisation seeks to reach the vulnerable, rescue the victims and to restore lives.


Christine and the 1


It can feel overwhelming.  When Christine first heard  the statistics, she was horrified and heartbroken.

'Once my eyes were opened, I could not close them again; never unknow what I now knew.  

Most people are familiar with the story of The Good Samaritan.  It is about a man who is traveling along a road when he is assaulted and his belongings are stolen. First a priest and then a Levite walk by and do nothing to help.  Then another man walks by; a Samaritan who took pity on the man and showed him compassion.  He stopped and helped him and went the extra mile taking him to an innkeeper and paying for his care.  

It is not that the priest or the Levite were bad people but they had other agendas to attend to and walked on by.  I am not comparing myself to the Samaritan but I decided that in the case of A21, I wanted to follow in his footsteps.  All the Samaritan had to do was to reach out to the 1.  We don't have to be capable of everything but we do have to be willing to do something.'

Christine's Campaigning 

For anyone who knows this petite, Welsh powerhouse, you will know that she has enormous levels of energy and boundless compassion.  She is also great fun to be with and her efforts to raise funds and awareness for The A21 Campaign have been well supported by her far-reaching network of friends.

Christine recently ran a Prayer group which took time each week to focus on the facts of modern slavery in one country at a time.  The group ran for 9 months and the numbers of people involved steadily grew from 4 to 25 people over that period.  She also organised an abseil for a group which raised sponsorship and this year, Christine held her third and largest A21 Campaign coffee morning with 15 cakes donated, each representing a different country from the Prayer group list.


I was delighted that Christine agreed to host a table for The A21 Campaign at the fortycubed Charity Gala Dinner and I can't wait to see what she gets up to next!

If you would like to learn more about the work of The A21 Campaign please click here and if you would like to make a donation as part of the fortycubed campaign please click here.







Saturday, 16 September 2017

Tell 9 people!


'She stood in the storm and when the wind did not blow her way, she adjusted her sails' 
Elizabeth Edwards

 

The wind in his sails


Martin was sailing before he turned five years old.  His parents still sail regularly and impressively, his dad still windsurfs despite turning 80 years old at the end of last year.   We've had 3 sailing boats in our 20 years together and I can say with some certainty that sailing is not for me but it is one of Martin's great passions.  


We've had a ridiculous number of hobbies and interests over the years but never considered youth work as something we would enjoy.  Circumstances led to us taking over running the youth club on a Sunday evening at our church for children aged 9-13.  We didn't realise when we took it on that this would become the highlight of our week.  The opportunity to have fun and get to know these inspirational young people has been a blessing and has opened doors for us to get much more involved in our local community.

 

Worlds collide

It was through Martin's job that he first got involved with The Ellen MacArthur Cancer Trust which combined his passion for sailing and working with young people. Dame Ellen MacArthur was on Martin's radar from 2001 when she raced single-handedly around the world in the Vendée Globe when she was only 24 years old!  She took her fame, influence and passion for sailing and founded The Ellen MacArthur Cancer Trust in 2003.

 

The Vision

The Ellen MacArthur Cancer Trust is a national charity that seeks to rebuild young people's confidence after cancer, using sailing to support, empower and inspire young people.  The results of a recent survey brought a smile to our faces!  To see the difference just one trip can have on these young people is remarkable and EMCT offers that support for as long as they require.


 

The Boy in 7 Billion by Callie Blackwell

This book tells the harrowing but inspirational story of Deryn and his mum, dad and brother and their journey with cancer.  Callie recalls the impact of the Ellen MacArthur trip Deryn enjoyed after months of gruelling treatment:

 'The boy I sent away on that minibus - a boy with no confidence, a shadow of his former self who was too scared to go outside in case he caught a bug or hurt himself - was certainly not the same boy they delivered back to me five days later.

The Ellen MacArthur Cancer Trust gave me back my son.'  

Tell 9 people

The Trust is currently using #tell9people to highlight that they only have funding to reach 1 in 10 of those young people who would be eligible to take part in an EMCT sailing experience.  If you can help EMCT reach more young people please consider donating via the fortycubed page. Their website is full of stories of young people who have been positively impacted by their sailing experiences. As a trustee and volunteer on the occasional sailing trip, Martin has found that the young people also have a profoundly positive impact on him.