Welcome to the Hope for Hollie Foundation Website

Picture courtesy of Venture Photography

In 2007 our beautiful 2 year old daughter, Hollie, was diagnosed with Niemann Pick Type C ('NP-C') an extremely rare and devastating genetic 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.

 

Hollie is the inspiration behind the Hope for Hollie Foundation, a registered grant giving charity which is working to make lifetime a reality for those fighting NP-C. 

 

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 NP-C.

 

The Hope for Hollie Foundation is #DreamingofaCure #DreamingofaFuture



Coming Soon .. .. Hollie's Once Upon a Christmas Fayre

Hollyoaks star and former Britains Got Talent Act support Summer Lovin' Ball

Hollyoaks Ayden Callaghan supports Hollie

On the Saturday 10 May 2014 the Hope for Hollie Foundation hosted its Grease themed Hollie’s Summer Lovin’ Ball at Doubletree by Hilton, StadiumMK

 

The evening marked the official launch of the Hope for Hollie Foundation as a registered grant giving charity supporting families affected by rare Niemann Pick Type C.

 

This is the 6th annual charity ball hosted by Hope for Hollie and yet again it was another huge success. 310 guests were treated to a fun packed night of entertainment whilst also raising money and awareness for a much needed cause.

 

The evening kicked off with a Grease medoly performance by Oxford Operatic Society followed by live music from local talent Holly Brewer who is an ambassador for the charity.  

 

Guests were treated to a personal appearance from the very lovely Ayden Callaghan who plays Joe Roscoe in Hollyoaks.  Ayden said he was delighted to attend the event to help raise the profile of Foundation and to raise awareness of Niemann Pick Type C. Ayden proved extremely popular with many guests giving donations for signed photos and pictures.

 

A surprise twist for guests happened when the ever popular former Britains Got Talent act, Stavros Flateley turned up at the venue to perform their show stopping act which had every single guest up on their feet.

 

Early indications show that the evening is set to have raised a staggering £18,000.  

WATCH OUR NEW 2014 AWARENESS FILM

ITV ANGLIA NEWS FEATURES HOPE FOR HOLLIE FOUNDATION

Hollie, Zayn and Joshua, Milton Keynes

 

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.

 

http://www.itv.com/news/anglia/2014-04-15/mother-sets-up-charity-to-help-children-with-rare-condition-often-known-as-childhood-alzheimers/

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 condition.

 

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.

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.