ellies-fund-blog

Kindermusik - Ellie Othick-Bowmaker music scholarship.

Mon, 27 Feb 2012 19:47:29 +0100

Last year I was approached by Harriet Gore - 'Kindermusik with Harriet' - who asked if it would be ok to set up a music scholarship in Ellie's name. Although she had never met Ellie, Harriet knew of her love of musicals and music and felt it was something that she would like to do.

We were very touched by this and of course said yes. What a lovely way to remember Ellie and keep her love of music alive.

Kindermusik with Harriet. Scholarship in memory of Ellie. In Harriet's words.

*All names have been changed except for Harriet's and Ellie's.

''Reading about Ellie through your blog and listening to her sing Butterfly Wings inspired me to create a scholarship program in her memory. I'm a Kindermusik educator, (mother of three) and own my own small pre-school music program. At Kindermusik we believe every child is musical. I personally believe that very child should have access to the gift of music and Ellie's scholarship allows this to happen.

Music has been always been there for me, whether it's been through a song or a musical score that somehow expresses how you feel, when words fail.

My music program has five families who receive the Ellie Scholarship. They receive class tuition and class material without charge.

An example of one family who receives scholarship is Laura*. Laura's mum has a rare form of Parkinson and requires full time care. The Kindermusik classes are the highlight of the families week as Laura gets to spend 'one to one' time with mum (dad waits outside the class in case mum needs assistance). Laura is 3 years old and during the classes helps her mum hold the instruments. If mum is unable to stand for the movement activities Laura holds her hands and does a very impressive chair dance with her. Laura is blossoming into a caring, confident and musical young lady. Mum's health and mobility are steadily getting worse, however each class creates a special memory for her and Laura.

*Joe attends the classes with his 70 year old grandma. Joe and his older sister were put in their grandma's custody due to abuse and neglect by their mother. When Joe first attended the classes he had no speech, poor motor skills and was very withdrawn. He's now my bundle of energy and loves listening and singing to the class cds. Joe's grandma is a widow and works part-time to support her grandchildren. Every week she thanks me for the classes and tells me what a difference they've made to Joe.

To apply for an Ellie scholarship families need to explain their situation and why they need assistance. All scholarships are granted confidentially.

Ellie was an inspirational charity worker and always wanted to give back. Her energy, even though her own body was failing her, was remarkable.

My Kindermusik program in memory of Ellie provides free music workshops during school holiday, we go to Respite Centres, Additional Needs groups and Womens Refuge Centres. My children usually attend these sessions with me (when they can), I feel it's important for them to see how blessed they are. We've met children who are terminally ill or with severe disabilities. My proudest moment was when my son Spencer was happily chatting to a boy at one of the centres. The boys face was deformed due to his condition, however my son could see HIM not his disability.

You don't need to be a saint to help other people, believe me I am not. However, sometimes you're lucky enough to be inspired by someone. For me it was a brave 14 year old girl, who faced her illness with courage and gave so much love in her short life. Someone like this can never be forgotten and my small music business is making a small effort to make sure this doesn't happen.''

Harriet has also sent me an email from a parent whose son benefits from the sholarship:

Hi Harriet,

I know you are very busy before and after the groups so it's difficult to talk, so thought I'd send you an email, hope it's not too impersonal but I just wanted to let you know just how much Elliot loves the kindermusik group. Seeing his reactions and responses to the class gives me such pleasure. It's the first group of it's kind we have attended and it's given me a new sense of hope that Elliot can find pleasure and enjoyment in something. It really seems to switch a light on with him that I haven't seen in him before.

I do take him to the sensory rooms whenever I can as he very much responds to light and movement. And we do attend a vision group every two weeks for children with visual impairment.

Last Wednesday when I brought him to Kindermusik, I couldn't believe his reaction to the session. I've never seen him smile so much at one time. Smiles from Elliot are very rare but on that day he smiled all day and was even giggling at night.....which never happens.

I have raved about your group so much to the ladies who run the vision group that they asked me to ask you whether they could attend some time, as they are always keen to learn from others to help the children they work with. So I hope this will be OK?

I did want to ask also about whether you could advise of any other groups of its type which you feel may benefit Elliot.

Though also I should give you some details about Elliot, which may help during the classes.

Elliot has cystic encephalitis, caused by a lack of oxygen to his brain whilst he suffered kidney failure at 5 weeks old.

Consequently this has left him with very limited mobility, he cannot hold his head up or roll or sit. He has often fisted hands but with stimulus they do open but he is unable to grasp things. He has we gather very limited vision, we think he can see light and dark. However his hearing is very good and we play to this strength. Unfortunately this does mean he can be hypersensitive to noises and his baby reflex of startling seems still present.
Thanks again and we look forward to seeing you next week.

*All names have been changed

Thank you to some recent fundraisers.

Mon, 27 Feb 2012 19:09:33 +0100

We'd like to say thanks to some of the people who have raised money for us recently .Every penny raised really is going to make a difference to children who have a brain tumour - whether it be through a grant to them or because it is being sent to the research laboratory or to help increase awareness. Only through awareness will things begin to change.

Profuse apologies if I have missed you off this list. Please email info@elliesfund.com and I will be happy to add you to this blog.

Scarborough Spa - staff donation.
Yorkshire Coast Morris
Dave Horton (£412.50 including Gift Aid)
Sylvia Laverack
Debenhams staff - Scarborough
The Nags Head - Scalby
Red Cherry Music
The Wedding Room
Frocka Bella
Wedding Belles

And some companies that have polyboxes that we have recently emptied too:
Tete A Tete
Sea View Cafe
Cafe Venus
Hanover News
Dare Hair
Doorstep Adventures
Dunelm

There are several more polyboxes around town that will be emptied over the next few weeks - I hope to add more names soon.

Scalby School year 11 immersion day.

Wed, 07 Dec 2011 14:22:43 +0100

Scalby School year 11s held an immersion day at the Rugby Club in Scarborough in aid of Ellie's Fund. They organised and ran it themselves and raised £460! The news story read:

STUDENTS from Scalby School indulged in a plethora of fun activities in memory of a former classmate.

The Year 11 pupils took part in ELLIEFEST at Scarborough Rugby Club, to raise £460 for Ellie’s Fund, set up following the death of 14-year-old Ellie Othick-Bowmaker from a brain tumour last year.

The day featured a host of events including rugby coaching, Zumba, beauty treatments, bands, dancing, a prom dress viewing and even sumo wrestling.

Student Niikan Tehrani said: “I enjoyed the event because it was great to spend time with our year group doing fun activities to raise money for a good cause.

“I hope that we do this again in future because days like these are what you will remember when you look back at school.”

Felloe pupil Ayse Aydemir added: “I really had a great time because all the activities were well organised and not the kind of thing you do every day.

“It was really good to know that while we were having fun all the money was going to such an important cause.”

UPM Raflatac - donated almost £5000 to Ellie's Fund at the end of last year....

Wed, 07 Dec 2011 13:56:51 +0100

UPM Raflatac shapes up to donate EUR 50 000 to charity

(UPM Raflatac, Tampere, 19 November 2010) – UPM Raflatac is donating 50,000 euros through a global exercise campaign to the well-being of children and youths. The biggest individual sums will be donated to the Candlelighters association (6,000 euros) and Ellie’s Fund (5,000 euros) in Scarborough, UK, and the association ELER (5,000 euros) in Nancy, France. Globally donations are made in 13 countries.

Candlelighters is a childhood cancer charity and Ellie's Fund raises money for research into childhood brain tumours. The association ELER helps children in an intensive care unit.

The Every Body Counts exercise campaign inspired over 1,300 employees, over half of UPM Raflatac personnel, worldwide to take regular exercises to earn points for their teams. The goals of the two-month campaign were a healthy lifestyle, personal wellness and enhanced team spirit.

From 167 teams, the three best globally and two best locally were able to donate a sum to registered organizations of their choice. Where possible, they followed guidelines that the organizations should be local and support children's and youths’ exercise and wellness

"The Everybody Counts programme has been a great success. Over 1,300 participants exercised for an amazing total of over 40,000 hours. In addition to improving personal fitness the aim was to build team spirit and well-being at the workplace. And of course, one of the main sources of inspiration for all the participants was the possibility to help children and youth in need", says Jussi Vanhanen, President, UPM Raflatac.

For further information, please contact:

Ms Elisa Nilsson, Vice President, Communications, UPM Raflatac, tel. +358 40 500 3150

About UPM Raflatac

UPM Raflatac, part of UPM’s Engineered Materials business group, is one of the world’s leading suppliers of self-adhesive label materials and the world’s number one producer of HF and UHF radio frequency identification (RFID) tags and inlays. UPM Raflatac has a global service network consisting of 13 factories on five continents and a broad network of sales offices and slitting and distribution terminals worldwide. UPM Raflatac employs 2,600 people and made sales of approximately EUR 0.95 billion (USD 1.3 billion) in 2009. Further information is available at www.upmraflatac.com

In March this year I made a video with - and for - Raflatac. It is now available on YouTube - here is the link: http://www.youtube.com/watch?v=xP4GEo7FtYU&feature=youtu.be

The photo is me with two of the winning teams - both of whom chose to support Ellie's Fund.

Time for a catch up.

Wed, 07 Dec 2011 13:54:06 +0100

It's been a while since I've had time to write this blog - there have been some personal things going on for our family and I haven't been too well since the end of September.

I'm currently trying to update the whole website - we have some new events planned over the next year (yes - that far ahead!) so please do watch the events page which will be updated as soon as I have confirmed details for all of our events.

How your money helps - have you looked at this page yet? I've updated it today. I can't believe that we've been sending grants out for less than a year and that we have sent cheques to 12 families already - and all but one of those children has a brain tumour! I am also told to expect at least one more referral, this coming week.

E-petition - http://epetitions.direct.gov.uk/petitions/17419 Now - I'd like to ask you for your help - please will you all sign this e-petition. It needs 100 000 signatures, and we may have the opportunity of an increase in funding being debated in the House of Commons. Maybe, just maybe, the world is about to hear & see that brain tumours are devastating more families then any other types of tumour - and you can help that to happen.... Please, please share this link, and ask your family and friends to sign too.
http://epetitions.direct.gov.uk/petitions/17419

Calendars. We only have a few calendars left now - people are loving them, and seeing them as the perfect stocking filler for Christmas. If you would like one, please go to our shop page - www.elliesfund.com/shop.php - and I'll get one out to you double quick!
To everyone who has helped us to sell almost 2000 calendars - and almost reach our target of £12 500 for the Leeds brain tumour research lab - THANK YOU.

I hope I'll be back soon as there's some exciting stuff to tell you about some of our fundraisers and their events.

Bye for now.

A calendar 'taster'

Wed, 14 Sep 2011 17:17:11 +0100

Here you go - a taste of the calendar. Vicky and I are Misses January! As you can see, very tastefully done - and all for an excellent cause.
More details about the calendar are in the post below and to see the rest of the photos - well, you'll just have to buy one!! (Go to our shop page www.elliesfund.com/shop)

Invitation.

Mon, 12 Sep 2011 09:43:16 +0100

We would like to invite you to join us with our launch of ‘Raise Your Hats for Research 2012’

Brain tumour research is desperately underfunded – for every £100 raised for research into cancer, only 70p is invested into brain tumour causes and cures. It is imperative therefore, to progress brain tumour research in the UK, that funds are generated through community, corporate and commercial activity to ensure the handful of brain tumour research centres that exist across the UK can carry on the work they do to make a difference to the patients of the future.

To enable the recently launched Translational Neuro-oncology Group at LIMM (Leeds Institute for Molecular Medicine), based at St James Hospital in Leeds, to not only continue but to grow and develop a group of ladies who have all been affected by brain tumours in some way decided to come together to produce a tasteful semi nude calendar with little more than hats for cover.

The knowledge that a semi nude calendar of ladies affected by cancer was not a ground breaking concept did not deter Carol Robertson of Brain Tumour Research and Support across Yorkshire and Tina Boden, Trustee of Ellie's Fund – Brain Tumour Trust, from developing the idea for ‘Raise Your Hats for Research 2012’. Whilst asking ladies from across the Yorkshire and Humber region to get involved it soon became very apparent that 2012 could end up having twice as many months as any other year for Millenniums to come. Suddenly 34 ladies all wanted to come together to ensure this calendar was a success and would generate significant funds for the Leeds Lab that they now see as their own.

Get Ahead Hats from Snainton were kind enough to lend the ladies some of the most beautiful hats around and a fantastic day was had by all at the photo shoot at the home of Barry Hickling who most generously allowed the ladies and their support team to take over his residence and gardens for the day.

The Raise Your Hats for Research 2012 Family Garden Party was held yesterday. It was full of entertainment for both children and adults alike and included an introduction from Carol and Tina about the marvellous work that all the ladies did to produce this great fundraising calendar. We invited people from allsorts of places that wanted to know more about how they can help to raise brain tumour awareness. Dr Sean Lawler (lead scientist at the lab) was also at the event to chat about the importance of raising funds for research at the Leeds Lab.

We would really like you to help us support the Research Laboratory - and to 'Raise Your Hats for Research'

- calendars are £10.00 each and are available to buy now through this link http://www.justgiving.com/calendarsales - or from our shop page - or from Carol in Leeds, Tina or Heather in Scarborough.

If you would like more information please email info@elliesfund.com and we will be happy to help.

So much to do and say- but so little time!

Tue, 06 Sep 2011 20:09:21 +0100

I'm going to start off with something that's important to me - but also important to all of you; for it's about Ellie, and without her I wouldn't be writing this and you wouldn't be reading it.

Ellie should be celebrating her 16th birthday this Thursday. Unfortunately it can't be - so I am inviting all of you to join our family - in your own home - in lighting a candle for her. 'Just because'. And if you make a wish - make it that a cure or at least an effective treatment be found for brain tumours - and soon - please. Thank you.

A quick charity update for you now; there are several new events on the events page again. Please take a look and if you can't attend, maybe you can tell others about them - you never know who might be interested but just doesn't know about us yet.

The fundraising total now stands at almost £48 000 - and we are supporting 8 children from across Yorkshire. 7 of them have a brain tumour and unfortunately 4 of them are already terminally ill.

I've just asked Dr Sean Lawler if there is another piece of equipment that he needs at the moment (for the brain tumour research lab in Leeds) and I'd like for Ellie's Fund to fund something later this year if we can...

Watch this space!

Right - very short and sweet; we have 3 events coming up this weekend and one the weekend after - so I need to go and do some more preparation.

Bye for now.

Don't forget Ellie's candle.

Heather

How we are helping:

Fri, 24 Jun 2011 12:23:47 +0100

There will be a new page on the site shortly, but for now I wanted you all to know how the money that YOU are donating is helping the children that we set out to help. As always: THANK YOU.

Briefly; Ellie’s Fund have so far raised over £43 000 (since March 2010). From this we have given £12 000 to the last charity that Ellie chose to support. Since we became registered in our own right, last September, we have donated £6500 to the new brain tumour research laboratory that opened in Leeds in February, just a few days before Ellie’s first anniversary. The money was used to buy a NanoVue Spectrophotometer – a piece of equipment that I the lead scientist, Dr Sean Lawler, tells me will be useful to him on a daily basis. The equipment is being dedicated to Ellie.

We are also currently helping 5 families who have a child going through treatment.

For one family ‘help’ meant that the money - £500 for 6 months – paid for their dog to be kennelled whilst the (single) mum was in hospital in Leeds with her child.

Dylane's mum has given me permission to tell you the following:
Dylane, aged 4, was diagnosed with a brain tumour at the end of 2010. She’s undergone chemotherapy and radiotherapy, and operations that left her unable to walk or talk. Dylane is very determined though, and just 6 months later she is back at school with her friends, albeit with some health problems left by the tumour and treatments. Her mum wanted her to have a special 5th birthday party. Ellie’s Fund were delighted to be able to help.

Dylane’s mum says: ‘

I have just received your cheque in the post and I am
overwhelmed. I can't believe the generosity of your
charity. I'm shaking with excitement about how the party can pan
out. Please pass on my thanks to the members of your charity and all
those who work tirelessly for such an amazing cause. It makes a huge
difference to people like us who are currently going through this
situation.’

The third family are using the money towards bills whilst they cannot work as they are at the hospital with their child.

A 13 year old is fulfilling dreams of flying lessons; unfortunately now whilst on palliative care...

And finally (for now) 3 year old Ebonie just loves playing games on a borrowed iPad. The £500 we have sent will buy her one of her own for her birthday, which will be spent in hospital.

Please don't stop fundraising. We can't do it without you...

Have you seen the events page recently? It's been updated, and it looks as though there could be a lot of FUN to be had whilst helping these children!

Bye for now,

Heather

A new start:

Mon, 09 May 2011 22:35:50 +0100

I am going to the hospital/ward where Ellie had her operations tomorrow, for the first time since she died. My stomach is churning just thinking about it. BUT, this is for a really good cause; it's to find out how we can make sure that the paediatric oncology patients that are treated there get information about Ellie's Fund.

So it's time for me to begin a new relationship with Leeds' General Infirmary. And this time I hope, a more positive one.This time I will be giving something to the hospital and it's patients; instead of having something taken away from me....

Good night.