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Celebrating The Hollie Foundation

Posted: 08.12.23

From 2014 The Hollie Foundation (originally known as Hope for Hollie) led the way as a grant-giving charity which looked to make a positive difference to the lives of those affected by Niemann-Pick disease type C…and although this journey is coming to an end, we feel that it should be a positive time of reflection on what has been a hugely successful decade for the volunteer led organisation!

With a heavy heart, we share the difficult decision to close The Hollie Foundation after 9 impactful years. Unfortunately, a decline in fundraising and volunteer support has led the trustees to make this tough decision.

To our cherished supporters your unwavering dedication made our successes possible, supporting families affected by Niemann Pick. Through your generosity, we were able to provide support funding for the Niemann Pick UK family officer for a period of 8 years, contribute to vital funding for research initiatives and provide funding directly to families to assist with home adaptions, specialist equipment and much more. Grant funding since 2014 has exceeded £181,000.

Founder of The Hollie Foundation Helen Carter, pictured alongside fellow NPUK Co-Chair Joella Melville

A special thank you to our dedicated trustees and volunteers, past and present. Your commitment has been the driving force behind our charity, helping make the lives of those affected by Niemann Pick Type C a little easier.

We want to express our deep gratitude to the local community of Milton Keynes, including businesses that have been steadfast supporters of our cause over the years. There are too many to name! Your support and collaboration have played a crucial role in raising awareness of Hollie’s story, Niemann Pick Type C and its impact on families.

We will always cherish the memories of our flagship event, the annual Hope for Hollie Ball. Through laughter, tears and renewed hope this event not only raised vital awareness but also crucial funds for our cause. The lasting memories created are a testament to the power of a community, giving our rare disease a much needed voice. The joy, unity and impact created each year will remain forever in our heart.

Still from the Short Film, Imagine

Despite Niemann Pick Type C being a rare disease our charity presence was magnified by the poignant stories of several local families directly impacted. A heartfelt thank you to these families for sharing their journeys, including our trustee Nadia for Zayn’s story, Jodie for Josh’s journey and Scarlett and Ben for Roman. We honour the memories of Zayn and Roman as we close this chapter and the profound impact they had on the community.

As a charity created through our own personal journey with this disease our commitment to the community doesn’t end here. As Hollie’s journey continues into adulthood we will continue our efforts, closely collaborating and supporting Niemann Pick UK. Together Hollie, myself and all the trustees wish to continue to sustain our support and awareness for this condition through the work of NPUK.

As we transition over the coming months, all remaining funds will be transferred to Niemann-Pick UK, ensuring a continued impact in the fight against Niemann Pick Diseases.

Thank you for being part of our journey. Your support, alongside the dedication of our trustees and volunteers, has left an enduring mark on the lives we’ve touched.

We share with you highlights of our last charity ball as a reminder of the great memories made. We continue #dreamingofacure

Helen x

The Hollie Foundation Founder & Niemann-Pick UK Co-Chair