Hope For Hollie - NEW Support, Information and Resources for Nieman Pick Disease Sufferers, Families and Carers

Home Page

The following are links to other sites where you can find out more information about Niemann Pick Disease.

Niemann Pick Disease Group
Neimann Pick US Site
Wikipedia Information
Joshua Cullip's Homepage
Addi and Cassi's Homepage
Hope For Aaditya
Calum Burdon's Homepage
Ara Parseghian Foundation
Georgina's Gang
Book of Ben
Daily Express Article Link

Hope for Hollie's Facebook

Hope for Hollie's JustGiving Page

Please note that hopeforhollie cannot be held resposible for the content of other sites.

This website is the central point for our campaign to raise awareness for the rare condition suffered by Hollie Carter, our 3 year old daughter and Joshua Cullip, age 2, both from Milton Keynes

The “Hope for Hollie” campaign is our way of trying to fight this disease not just for Hollie but all other children like her.

The idea of our full campaign is to raise awareness and encourage people to adopt the Niemann Pick Disease Group (UK) as one of their designated charities. 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 following the "Hope for Hollie" 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

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.

KTVU News Link
KCBS Link
Original Story in the Wall Street Journal

Hollie-Wood Ball 16th May 2009 "A Night of Glitz and Glamour Celebrating the Golden Era of Hollywood"
A Big Thank You to all that came to the ball, it was another amazing night, for the second year in a row. We'll have the pictures added to our gallery very soon, these were taken by Lee Marshall, who kindly donated his services on the night. We'll also have a full report, and confirmation of the total raised soon, but thanks once again to everyone who helped, donated their time and money, or came along on the night to show their support.
The Following Video was kindly provided by askmk.tv - we thank them for their support

Hollie-Wood Ball 2010 Countdown!
	??? Days to Go!
We'll start the official count-down to next year's ball soon!

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.

Click here to join in now.

Rare Disease Day

World Rare Disease Day took place on February 28, 2009.
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 2009 was to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives

You can find out more at rarediseaseday.org

"Hope for Hollie"
in aid of NPDG(UK)