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In 2007 our beautiful 2 year old daughter, Hollie, was diagnosed with Niemann Pick Type C, an extremely rare metabolic condition which causes neurological decline and for which there is no cure. Less than 100 children suffer from this condition in the UK and only 1000 worldwide.
This website is the central point for our campaign to raise wareness of Niemann Pick Type C, a condition not only affecting our daughter Hollie, now aged 4 but also another little boy from Milton Keynes, 3 year old Joshua Cullip (pictured above with Hollie).
The "Hope for Hollie" campaign has been launched to help raise awareness of niemann pick disease and to highlight the fantastic work that the Niemann Pick Disease Group (UK) do to support families affected by this devastating terminal illness. The charity is extremely small and needs vital funds to help continue funding a clinical nurse specialist, help support families affected by the disease and to contribute to vital research into a treatment or cure. To find out more about the charity you can visit their website at http://www.niemannpick.org.uk/ or alternatively for more information/ leaflets on the charity etc please contact Toni Mathieson, the charity's Executive Director on 0191 415 0693 and make reference to the "Hope for Hollie" campaign.
The "Hope for Hollie" website has been set up to provide you with some more information relating to the disease and to update you on Hollie’s progress. The site will also advertise forthcoming charity events and will acknowledge all fundraising events carried out by people in response to our campaign. Please do therefore keep us informed of any fundraising activities you carry out so that these events can be advertised and/or a write up/pictures can be placed on the website.
Here's one of our latest campaign videos, which was produced especially for the 2009 Hollie-Wood ball by ask-mk.tv.
Thank you again for your support. We continue to hope and pray that Hollie will remain free from the neurological signs of the disease for many years in which time a treatment/cure can be found.
Pete and Helen Carter
HOLLIE'S STORY IN MAJOR MAGAZINE ARTICLE Promising Developments in the Fight Against Niemann Pick, and the Search for a possible cure.
The story of Hollie, and fellow Milton Keynes based Niemann Pick sufferer, Josh Cullip, has been covered in depth by the popular nationally available magazine, Chat
The article was produced in association with and on behalf of Rare Disease UK, who's website is at http://www.raredisease.org.uk
In the article, Helen tells the story of hollie's diagnosis, as well as the amazing fundraising efforts that have taken place, and the incredible co-incidence of finding another family struck by Niemann Pick within the same town. Please click the links below to open a window containing the full article, reproduced here with kind permission of Chat magazine. To make it easier for you to read online, the article has been split across two separate pages.
BREAKING NEWS Promising Developments in the Fight Against Niemann Pick, and the Search for a possible cure.
LONDON - Friday 10th April 2009 There is promising news coming out of a children's hospital in Oakland, California in the US regarding a possible breakthrough treatment, which may help sufferes of AIDS as well as other rare diseases including Niemann Pick type C. The discovery was made as part of research being undertaken by the Hempel family, who have five year old twins Addie and Cassie (as featured in our links section) both suffering from Niemann Pick type C. You can read more about this exciting developement at the links below, including the original story in the Wall Street Journal newspaper. The news also appeared on Channel Five's national news programme in the UK, a video link to their report is below.
Hot off the Press The First Edition of the Hope For Hollie Newsletter
In order to keep everyone informed on how the Hope For Hollie campaign is progressing, we've produced a printed newsletter. Packed with information about Hollie, the origins of Niemann Pick type C, Fundraising ideas, and details of upcoming events, it's well worth a read.
You can download your electronic copy now by clicking on the brochure opposite.
In order to be included on our e-mailing list, so we can keep you informed about important events, and espcially when our next newsletter is produced, please join our Forum All forum members can recieve email updates with the latest news.
Join The Forum!
One of the aims of the Hopeforhollie campaign is to increase awareness of Niemann Pick, and also to provide support to other families who are living with the disease.
You can join our forum now, where all aspects of Niemann Pick can be discussed, with contributions from families of people affected, carers, experts, and also discussion about funcdraising activities.
World Rare Disease Day 2010 will take place on February 28, 2010. Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support.Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.
The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives
In 2007 our beautiful 2 year old daughter, Hollie, was diagnosed with Niemann Pick Type C, an extremely rare metabolic condition which causes neurological decline and for which there is no cure. Less than 100 children suffer from this condition in the UK and only 1000 worldwide. 
