About us
Created by a family who understands
Here & Now was founded from lived experience of childhood rare disease and the gaps families face after diagnosis.
Our Story – Why Here and Now?
As a registered nurse with 16 years’ experience, I had spent years caring for and supporting people with complex health needs. But when our daughter, Ella-Rose, was diagnosed with Friedreich’s ataxia at eight years old, I experienced rare disease from the other side—as her mum.
Her diagnosis changed our family’s world. Alongside the fear and uncertainty came appointments, travel, equipment and the daily challenge of finding the right support. We learned how exhausting that search can be, and how much difference timely, compassionate help makes.
My husband Michael—Ella-Rose’s dad—and I founded Here & Now from that lived experience. We wanted to create the kind of charity we would have needed: one that listens, understands and responds to what a family needs now, without unnecessary barriers or long delays.
Ella-Rose is at the heart of why we began, but Here & Now is for every child and family facing rare disease. We cannot take away a diagnosis, but we can help families feel seen, supported and less alone.
Our approach
Family-led
We understand the emotional and practical reality because rare disease is part of our own family story.
Fast and human
We keep applications clear, communicate honestly and consider every family as individuals.
Focused on impact
We support practical needs, inclusion, wellbeing and opportunities to make lasting memories.