Hollie's Midsummer Night's Dream

There was a charity ball at Jury's Inn in The Hub in Central Milton Keynes on Saturday 23rd June in aid of the Hope For Hollie Campaign (details below) which was an evening where dreams inspire hope.

With a drinks reception, three course meal, a disco, charity auction and raffle plus live entertainment on stage.

MKFM were there supporting the event.  Check out the photo gallery to see if we snapped you...

Discounted hotel accomodation 

We have secured discounted hotel accomodation at the venue for this event. 

Rooms are on a bed and breakfast basis and will be £70 for a double and £61.50 for a single. 

We have a limited number of rooms at this discounted price so it will be on a first come first served basis.  Please contact Jurys Inn on 01908 843700 and reserve your room using booking reference hope23/06/12.

Payment for the room will be taken on arrival and is the responsibility of those that have booked the rooms.

Holly Brewer will perform live at 2012 ball

We are delighted to have secured an exceptionally talented local singer to perform at this year's event.

Holly Brewer is a 17 year Vocalist/Pianist from Milton Keynes. Her passion for music began at a very early age singing a solo at the Royal Albert Hall Age 9.  

Holly has gone on to perform in several theatre and hotel venues and sang with a 15 piece Big Band Age 13. She also performed  alongside the Late Johnny Dankworth with Aylesbury Youth Jazz Orchestra and appeared in the 'Thats Amore' Show twice at MK Theatre. 

In October 2009 she entered and won The Milton Keynes Top Talent Competition. The winning prize was a paid contract in the Pantomime 'Cinderella' as the Apprentice Fairy, appearing with Bobby Davro, Mickey Rooney, Anthea Turner, Louise Dearman and A1's Ben Adams.

Holly continues to pursue her career in music studying grade 7 & 8 piano and has regular vocal training.

She performs locally on behalf of 'Real Music Mk' and is mentored by her Uncle Musical Director Barry Robinson. 

We are sure that once you have heard Holly perform you will agree that she has an extremely bright future ahead of her!

Guests arriving at this year's ball will be treated to the sounds of a wonderfully talented and highly sought after String Quartet.

String of Pearls are made up of musicians who graduated from the Royal Academy and the Royal College of Music and quickly built up an extensive repertoire of music. They have played for royalty, celebrities, and on TV and have performed at an array of events.

To find out more about String of Pearls visit their website www.stringofpearlsquartet.co.uk 

The Hope for Hollie Campaign

The Hope for Hollie Campaign was launched in 2007 by Helen and Pete Carter following the devastating news that their daughter Hollie, then aged 2, had Niemann Pick Type C, an extremely rare metabolic condition which causes neurological decline and for which there is currently no effective treatment or cure.

The purpose of the Hope for Hollie Campaign is to raise awareness of Niemann Pick Type C and to raise funds to support the work of the Niemann Pick Disease Group (UK).  The campaign also provides a travel fund which enables patients affected by the disease to access vital research studies taking place at the National Institute of Health in Maryland, USA. The fund covers the flight costs of the patient and one accompanying adult.

 Since launching the campaign in 2007 the fund has now raised in excess of £100,000 for the Niemann Pick Disease Group (UK).   Toni Mathieson, Executive Director of the Niemann Pick Disease Group (UK) comments:-

 ‘As a small charity, the NPDG (UK) relies solely on membership fees, voluntary donations, fundraising events and charitable grants for its income. We fund the salary of a full time Clinical Nurse Specialist, providing expert care and practical advice, plus home visits whenever necessary. The Group has recently employed a Families Officer who will offer an individual advocacy service providing non-clinical advice, information and support via face-to –face meetings, the telephone, email and in writing.

Since launching the “Hope for Hollie” Campaign, Helen and Pete have raised over £100,000 in support of the NPDG (UK) – helping us to provide support to families affected by this devastating disease. It took doctors two years to finally diagnose Hollie's condition, two very distressing anxious years. The “Hope for Hollie” Campaign, along with the NPDG (UK), aims to reduce the time it takes to reach a diagnosis by raising awareness of the signs and symptoms of NP-C amongst health professionals, hopefully improving care for families in the future.

The NPDG (UK) provides care, support and information, deals with emotional, as well as practical issues, and has developed a strong family support network, helping to reduce feelings of isolation and despair. We hold an Annual Family Conference, bringing families together, enabling them to share their thoughts, experiences and tips for daily living – something Helen has found very useful. We have also introduced an annual interactive workshop for professionals; this event aims to bring together scientists, researchers, clinicians and other health and social care professionals with an interest in this group of diseases. Over the course of the day, delegates are given the opportunity to share current information regarding all aspects of Niemann-Pick diseases, including clinical management, research and potential therapies.

Apart from Pete and Helen’s contributions to funding, awareness and support, Helen Carter has joined the Niemann-Pick Disease Group (UK) Board of Trustees, underpinning her commitment to supporting other affected families. Helen’s role within the Board is Parent Advocate; she is able to provide a platform for families to voice their ideas and suggestions, all of which help to shape the future direction of the Charity.

An important part of the Group’s work is to actively support and facilitate research that will lead to an improved understanding of this group of diseases. A portion of the funds raised by Helen and Pete’s Campaign has been used to set up the “Hope for Hollie Travel Fund”, which assists families in accessing research studies in the USA.

Together, through their extensive media campaign, the Carter family has helped to raise the profile of Niemann-Pick Type C Disease, and to highlight the impact it can have on families and society, in many different ways. The NPDG (UK) is very grateful for the continuing support of the “Hope for Hollie” Campaign – giving hope and encouragement to all those affected by Niemann-Pick Disease Type C.

To find out more information on the Hope for Hollie Campaign please visit www.hopeforhollie.co.uk

What is NPC?

NPC is a rare inherited metabolic condition. Hollie cannot process cholesterol properly. Excessive amounts of cholesterol has accumulated within her liver and spleen and is continuing to build in her brain, doing irreversible damage.

Symptoms of NPC can include:- 

• Enlarged spleen and liver;
• Prolonged jaundice;
• Progressive loss of motor skills;
• Difficultly walking;
• Slurred speech;
• Swallowing problems;
• Seizures; and
• Dementia.
• There are just over 500 known cases of NPC worldwide. It is believed, however that the number of people affected is higher but difficulties diagnosing the disease make it hard to accurately assess the occurrence rate. .

NPC is always fatal. The vast majority of children die before age 20 (and many die before the age of 10).

How is it inherited?

A child with Niemann pick disease will have inherited two abnormal genes from their parents, one from the mother and one from the father. In the parents these genes are recessive, that is to say that each parent carries a single copy of the gene without any clinical signs of the disease. Every time a couple who each carry the recessive gene have a child, there is one in four chance (25%) that the child will inherit the disease. 

A Reminder of Where Your Money Goes

We are pleased to confirm that we have raised over £100,000 to help support the Niemann Pick Disease Group (UK). With the great fundraising events already in the preparation stages for 2012 we are hoping to add to this figure significantly by the end of the year.

Your money continues to be used in three ways:

(1)       to help the NPDG(UK) continue support work for families affected by this disease which includes the  funding of a clinical nurse specialist and Families Officer;

(2)       to aid and promote research into Niemann Pick type C;

(3)      to enable the  "Hope for Hollie" travel fund to continue. This fund offers financial support for families suffering from Niemann Pick type C to  travel to theUSAand access research studies taking place at the National Institute of Health in Maryland.

In 2011funds raised from our annual Hope for Hollie skydive were split 50/50  between the NPDG(UK) and a fund to help Hollie’s family return to the National Institute of Health followed by a dream holiday to Disneyland in Florida whilst Hollie remains well enough.

Please remember its not all about how much you can give – it is just as important for us to continue to raise awareness of Niemann Pick Diease by letting as many people as possible know that this disease exists.