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 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
GRANT FUNDING AVAILABLE
Do you have a loved one affected by Niemann Pick Type C? Did you know that the Hope for Hollie Foundation can provide grant funding to individuals who have a diagnosis of NP-C, where statutory funding is unavailable, for such things as specialist or sensory equipment, specialist seating, equipment which will aid education, development and communication, adaptions around the home or garden as well as other items that will help towards their medical or social care needs.
Organisations and Research Grants
Did you know we also offer grant funding to other charitable organisations working in the Niemann Pick field to help with the continuation and enhancement of vital services as well as providing grant funding to help support research into NP-C.
Our full grant making policy and application forms can be found under the 'What We Do' tab above.
Hope for Hollie is delighted to have been able to support many families, organisations and research institutions already in a variety of ways so please get in touch if you feel we could be of help.
Short Film 'IMAGINE' inspired by Hollie Carter wows viewers
IMAGINE is a short movie created, produced and directed by talented young film maker Carl Mason. The film which is ten minutes long follows the story of Millie a little girl fighting Niemann Pick Type C. The film highlights the struggles faced by Millie's family in coming to terms with the disease and the devastating impact it has on Millie. This unique piece of NP-C awareness is supported and funded by the Hope for Hollie Foundation, Niemann Pick UK and the International Niemann Pick Disease Alliance. Carl Mason was inspired by close friend Hollie Carter who was diagnosed with NP-C at age 2.
Sam Bailey Gives Hollie's Best of British Ball the X Factor!
On Saturday 13 June the Hope for Hollie Foundation hosted its 8th annual charity ball at Doubletree by Hilton, StadiumMK. This year’s ball took on a Best of British theme and was attending by over 220 guests. The evening included a show stopping performance by 2013 X Factor Winner Sam Bailey who treated guests to a live performance of tracks from her new album. Sam and her husband Craig were in attendance throughout the evening and Sam was keen to get involved in many of the fundraising activities throughout the night which included a dance off between two teams of guests on the dance floor.
The evening kicked off with a superb ballroom dance performance by JustDance Academy. The event was hosted by Paul Fitzgerald and Gavin Pomfret who kept guests amused throughout the course o f the evening.
In addition the evening saw the premiere of short film IMAGINE created, produced and directed by talented young film maker Carl Mason. The film which is ten minutes long follows the story of Millie, a little girl affected by NP-C and highlights the struggle of her family coming to terms with the disease and the devastating impact it has on Millie. The film was supported and funded by the Hope for Hollie Foundation, Niemann-Pick UK and the International Niemann Pick Disease Alliance . This will now become part of a global awareness campaign for all three charities and its producer Carl Mason through social media. Since the films release onto social medial on Saturday it has already had in excess of 4,000 hits and growing.
Early indications are that the fundraising ball is on target to have raised in excess of £12,000 to help support the work of the Hope for Hollie Foundation.
Hope for Hollie Foundation announced as MK NEWS and MK WEB Charity of the Year for 2015
We are delighted to announce that the Hope for Hollie Foundation has been selected as MK News and MK WEB Charity of the Year 2015! Thank you to everyone who took the time to vote for us. This is an amazing opportunity to raise the profile of the charity and awareness for Niemann Pick Type C.
WATCH OUR NEW AWARENESS FILM
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.