As we begin Niemann-Pick Disease Awareness Month, we are shining a spotlight on the incredible efforts of families, friends and supporters who are helping to raise awareness of this rare disease and make a difference to those affected by it.
To start the month, we are delighted to share the story of Alfie Lewis, who recently organised the hugely successful Noah’s Charity Ball in support of his younger brother, Noah, who is living with Niemann-Pick disease Type C (NPC).
The event brought together family, friends, businesses and supporters for a memorable evening of fundraising, awareness raising and celebration. It was a powerful reminder of the strength of community and the difference people can make when they come together for a cause close to their hearts.
A Night Dedicated to Noah
When asked how the idea for Noah’s Charity Ball came about, Alfie said:
“…I wanted to bring everyone together for one special night dedicated to Noah. It was a chance to raise funds, spread awareness and show Noah just how many people are behind him…”
The evening was filled with laughter, music, dancing and an overwhelming sense of support for Noah and his family. Reflecting on what the event meant to them, Alfie shared:
“…it meant more than I can put into words. Seeing a room full of people there for Noah, was honestly the best feeling in the world…”
A Moment to Remember
Organising an event of this scale takes a huge amount of work, but for Alfie there was one moment that made it all worthwhile:
“…taking a moment to look around and see everyone smiling, dancing and supporting Noah. After all the work that went into the evening, that moment made everything worthwhile…”
Why Supporting NPUK Matters
As Noah’s brother, Alfie understands first-hand the challenges faced by families affected by Niemann-Pick disease and the importance of having support during their journey. He said:
“…Niemann-Pick is incredibly rare, and families can feel very alone after a diagnosis. NPUK gives families support, understanding and hope when they need it most…”
A Message of Thanks
The success of Noah’s Charity Ball would not have been possible without the support of everyone who attended, donated, volunteered or helped behind the scenes. Alfie wanted to share the following message:
“…from the bottom of my heart, thank you. Whether you attended, donated or helped behind the scenes, you made the evening unforgettable and showed our family just how loved Noah is…”
Thank You
As Niemann-Pick Disease Awareness Month begins, we would like to say a huge thank you to Alfie, Noah, their family and everyone who supported this fantastic event.
Throughout October, we will be sharing stories from our community, raising awareness of Niemann-Pick disease, and highlighting the realities faced by those living with the condition every day.
Together, we can ensure that no patients and families face Niemann-Pick diseases alone.