Welcome to the Hope for Hollie Foundation Website
In 2007 our beautiful 2 year old daughter, Hollie, was diagnosed with Niemann Pick Type C ('NP-C') an extremely rare metabolic condition which causes neurological decline and childhood dementia and for which there is currently no cure. Less than 50 children suffer from this condition in the UK and only 1000 worldwide.
In 2008 we launched the Hope for Hollie campaign to raise awareness and funds for NP-C. Over the years the campaign went from strength to strength gaining a strong network of supporters.
In March 2014 a new chapter in the history of Hope for Hollie began when the Hope for Hollie Foundation obtained charitable status.
This website is the central point for the activities of the Hope for Hollie Foundation, registered charity number 1156216. It is regularly updated with upcoming events and fundraising activities and provides information relating to the governance of the charity and information relating to NP-C.
ITV ANGLIA NEWS FEATURES HOPE FOR HOLLIE FOUNDATION.
On 15 April 2014 ITV Anglia News ran a headline feature on the new Hope for Hollie Foundation and the three children in Milton Keynes affected by this devastating condition. You can read the full story and view the footage of the story by clicking on the link below.
Charitable Status Announcement
We are delighted to announce that the Hope for Hollie Foundation achieved charitable status on the 17 March 2014 under charity number 1156216.
We strongly believe that obtaining charitable status is a testament to the commitment and hard work of the many Hope for Hollie volunteers; their strong support, given over many years, has enabled us to take this step towards a new chapter in the work of Hope for Hollie.
Since the Hope for Hollie Campaign began in 2008 it has developed a strong network of supporters in Milton Keynes and further afield and has helped to raisesu bstantial sums of money to support families affected by this devastating and debilitating life limiting condition.
Going forward, all aspects of fundraising, awareness and education will be transferred to the new organisation, which will be known as ‘The Hope for Hollie Foundation’. In line with its charitable objectives, the Foundation’s trustees will decide how funds raised are distributed.
As a grant giving organisation, the Hope for Hollie Foundation will provide grants to affected individuals where there is a recognised social or medical need and to organisations with a common
interest such as those that provide support or services specifically relating to aspects of NP-C or who support research into
The Foundation will also seek to advance the education of the public in all aspects of Niemann-Pick Type C (NP-C) and to make a positive difference to those affected and their families by aiding research into the disease through partner funding.
Helen Carter, founder of Hope for Hollie and Chair of the newly registered Hope for Hollie Foundation will continue in her role as a Trustee of Niemann-Pick UK. Although the Hope for Hollie Foundation will no longer exclusively support the work of Niemann-Pick UK, the two organisations share a common goal and will retain a strong professional relationship.
Through the giving of grants to other common interest organisations we will be able to strengthen the support that is available to families and further research into the condition -which is vital if we are to find a viable long term treatment or cure.
The Hope for Hollie Foundation has a Board of Trustees made up of eight highly committed individuals. In addition, the Foundation is delighted to have Professor Paul Gissen of Great Ormond Street Hospital as its medical advisor.
CHARITY SINGLE RELEASE
On the 18 May in collaboration with RGS Music Group and Palladium Solutions the Hope for Hollie Campaign was delighted to launch its charity single The Climb sung by the superbly talented Holly Brewer and featuring a special appearance by Hollie and nine of her close friends. The single is available for download on Itunes now and the accompanying music video can be viewed on You Tube. Full details can be found on our dedicated charity single webpage www.hopeforholliesingle.com
Please help raise the profile of our social media campaign for the single by tweeting or linking on facebook!
'Dreaming of a Cure' Hoodies
We have recently taken delivery of some fantastic Hope for Hollie hoodies in various colours including pink, purple, electric blue and lime green. We are asking for a minimum donation of £18 per hoodie. If interested please email firstname.lastname@example.org
Hope For Hollie's 5th Annual Charity Ball Takes on a Charlie and the Chocolate Factory Theme!
Hollie's Chocolicious Ball took place on the 18 May at Jurys Inn, Milton Keynes. The event was attended by over 300 guests and was hosted by MKFM morning show presenter Gaz Wesley. Guests were welcomed by Mr Willy Wonka and were treated to a Charlie and the Chocolate factory performance by talented students of Shenley Brook High School. The evening included the launch of our charity single, The climb, a fantastic auction, raffle and live performance by Holly Brewer followed by a disco. Guests were also entertained by a casino, magician, balloon man lots of sweet treats.
Guests have once again provided extremely positive feedback and early indications show that we are on target to raise well over £10,000!
Hollie's Trailer Is On The Road!
Courtesy of Trailer Resources, the Hope for Hollie campaign is now taking to the road with their Niemann Pick awareness campaign. On the 9th June ‘Hollie’s Trailer’ was launched and will travel between various locations around the country and possibly Europe.