Hope for Hollie Travel Fund

The Childrens Inn, Home from Home for patients staying at National Institute of Health in Maryland, USA

 

 

Following the amazing success of the first Hope for Hollie Charity Ball back in April 2008, an event that raised a staggering £22,000 for the Niemann-Pick Disease Group (UK) , it was agreed, in collaboration with the charity, that a “Hope for Hollie” Travel Fund would be set up to help families with children affected by Niemann-Pick Type C to access research studies in the USA.

 

Hollie’s mum Helen explains:

 

 “The reason why we wanted to launch the travel fund was because we had become aware of a research study into Niemann-Pick Type C ('NP-C') taking place at the National Institute of Health (‘NIH’) in Maryland USA which was recruiting patients from all over the world. This study, which is ongoing, is an invaluable opportunity for researchers to learn more about NP-C and how it affects a wide spectrum of patients. However, to enable the researchers to collect the data they needed, there was a real need for patients from the UK to consider enrolling on it. Unfortunately despite all travel costs being covered from a port of entry in the USA, UK patients and their families had to find the money to cover the cost of the flights from the United Kingdom and all other expenses associated with travelling abroad.

 

Pete and I  had already decided to enrol Hollie on to the study before the Travel Fund was set up and we knew only too well how much of a financial commitment this could be for families - especially as you are committing to travel to the NIH on a yearly basis for a number of years. For our first visit both our family and Joshua Cullip’s family embarked on a stressful few weeks of media work to try and raise the funds needed. We were extremely fortunate that Hollie and Josh’s story was picked up by a major airline who generously funded all our flights in 2008. However, this made us even more aware of how hard it can be for families to access the studies. We had to invest a huge amount of emotional energy into trying to raise the money and using the media is not something every family wants to do. Although our campaign was raising thousands of pounds we knew that in terms of research costs, this was a mere drop on the ocean. We therefore felt that one of the ways in which we could get the maximum benefit from part of the money we had raised would be to set up a Travel Fund which would in turn help researchers by hopefully allowing extra patients to enrol. 

 

With the kind agreement of NPDG (UK), the Hope for Hollie Travel Fund was launched. The fund has been running now for three years now and covers the cost of the patient and one adult to travel to the USA. The Fund is not means tested and is therefore open to all families.

 

So far the Fund has enabled six families to travel to the NIH.”

 

If you are a family who has a child or children affected by NP-C and you wish to apply to the fund to help with travel costs to the National Institute of Health please contact Toni Mathieson, Executive Director of the Niemann-Pick Disease Group on 0191 4150693