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 mission
Here & Now Children’s Rare Disease Support exists to help children living with rare diseases and their families access practical support, feel included and enjoy meaningful experiences. We focus on needs that can make a difference to everyday life, from a useful item to help with travel or time together as a family.
Our Scotland pilot
We are starting with a family support pilot in Scotland for children under 18 with a confirmed rare-disease diagnosis. This is a developing service with limited charitable funds. Each request is considered individually; we cannot promise funding for every eligible family. Support across the UK is a future aim, subject to funding and trustee approval.
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.
Who makes decisions?
Our trustees oversee the charity and its funds. Michael is chair, Jenny is deputy chair, and Lindsay is a trustee. At least two trustees without a relevant conflict of interest must approve an award and its payment. A trustee connected to a request must declare that interest and take no part in the decision.
How charitable funds are used
Funds support approved requests that further our charitable purposes. Trustees consider the child’s benefit, urgency, cost, other support available and fairness between families. We normally pay an approved supplier or service provider directly. An award is never conditional on a family fundraising for us, appearing in photographs or sharing their story.
We are a Scottish Charitable Incorporated Organisation (SCIO), charity number SC055345. Our postal contact address is 13 Almondbank Drive, Livingston, EH54 5JU. Our grant terms, safeguarding policy and complaints process explain our responsibilities and how to raise a concern.
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.