One Year of Community Engagement: Reflections from Paige at SOFT UK

At SOFT UK, a small team is working quietly but powerfully to support families affected by Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) across the United Kingdom.

Behind the scenes, just four part-time staff coordinate support, resources, events, and advocacy that reaches families in hospitals, homes, and communities nationwide. Recently, SOFT UK Charity Director Shaun Dowdall sat down with Paige Free, the organisation’s Community Engagement Officer, to reflect on her first year in the role. Marking the anniversary of her start on 3 March, the conversation explored what surprised her most, the moments that meant the most, and where SOFT UK hopes to go next.

A Small Charity with a Big Reach

Like many small charities, SOFT UK operates with a flexible and collaborative structure. With a small team, roles naturally overlap, and everyone contributes wherever they are needed most. During the conversation, Shaun joked about the team sometimes referring to their shared workload as “SOFT Central”— a place where tasks blend together and everyone steps in to keep the charity moving forward.

This adaptability is one of the reasons SOFT UK is able to achieve such a wide reach despite its modest size. While the organisation focuses specifically on Trisomy 13 and Trisomy 18, its work connects with families and professionals across the UK, from hospital settings to community events. For Paige, the scale of that impact was one of the first surprises when she joined the team. “I knew the charity did important work,” she reflected, “but I didn’t realise just how many people it was reaching.”

The Power of Connection

One of the most meaningful aspects of Paige’s role has been hearing directly from families. Many parents who contact SOFT UK are facing one of the most challenging moments of their lives — a diagnosis during pregnancy or shortly after birth. Often, the first thing they express is a sense of isolation. Again and again, families share a similar message: “I felt completely alone until I found SOFT UK.” A single conversation, a resource pack, or a connection to another family can make an enormous difference.

For Paige, these moments have been deeply impactful. Hearing from parents who say that the charity helped them feel understood or supported reinforces why the work matters so much. It is a reminder that behind every statistic or awareness campaign are real families navigating complex and emotional journeys.

The Challenge of Visibility

Despite the scale of its impact, SOFT UK operates in a niche area within the wider rare disease community. That can make visibility and funding particularly challenging. Many funding streams and large grant programmes are designed for organisations supporting broader populations. Smaller charities focused on specific conditions, like Trisomy 13 and 18, can sometimes struggle to fit neatly into those categories.

Partnerships with other rare disease organisations have helped amplify awareness and collaboration, but raising visibility remains an ongoing effort. For Paige, navigating this landscape has been one of the realities of working in the rare disease sector.

A Breakthrough During Trisomy Awareness Month

One of the standout successes of Paige’s first year came during Trisomy Awareness Month. In just the first seven days of the campaign, SOFT UK saw a 400% increase in online reach, surpassing the organisation’s previous monthly engagement records. This surge in visibility showed just how much potential there is when awareness efforts gain momentum.

Last year alone, SOFT UK’s online content reached over one million people, a milestone that highlights the growing interest in learning more about Trisomy 13 and 18. Digital engagement has played a significant role in this growth. While social media continues to be important, the SOFT UK website has now become the charity’s largest driver of information access, attracting more visitors than all social platforms combined. For families searching for answers, that visibility is vital.

Closing the Information Gap

During routine prenatal screening, many expectant parents are tested for conditions including Edwards syndrome and Patau syndrome. However, not everyone receives detailed information about these diagnoses or the support available. It is not uncommon for parents to discover SOFT UK only after receiving test results, sometimes saying they were unaware the charity existed. Helping to close that information gap is a key part of the organisation’s work. By increasing awareness among healthcare professionals and families, SOFT UK aims to ensure that anyone facing a Trisomy 13 or 18 diagnosis knows where they can turn for information and support.

A Personal Milestone: The First Family Day

For Paige personally, one of the most memorable moments of the past year was attending her first SOFT UK Family Day. Just two months into her role, she felt understandably nervous about sharing her story and meeting families for the first time. However, those nerves quickly faded as she was welcomed warmly by volunteers and families who already felt connected to the charity.

“People were saying hello and recognising me,” she said. “It suddenly felt like I was part of the community as well as part of the team.” That experience reinforced what makes SOFT UK unique — the strong sense of family that exists within the community.

Strengthening SOFT UK’s Voice

Over the past year, Paige has also played a key role in helping strengthen the visibility and professionalism of SOFT UK’s resources. New materials have been developed to support both families and professionals, including: Updated information leaflets for families, Training materials for healthcare professionals, Educational webinars and digital resources. These tools help ensure that families receive consistent, accurate information while also supporting healthcare teams who may encounter Trisomy diagnoses in clinical settings.

The growing range of resources has also helped raise awareness within hospitals. Paige noted that her own local hospital now stocks SOFT UK materials — something that was not the case previously.

Looking Ahead: Awareness All Year Round

While awareness campaigns provide powerful moments of visibility, the long-term goal is to maintain that momentum throughout the year. Instead of awareness being concentrated in a single month, SOFT UK hopes to build consistent recognition so that families and professionals alike immediately know where to turn. The organisation plans to continue expanding its digital reach, strengthening partnerships, and attending more events that raise awareness of Trisomy 13 and 18.

Ensuring No Family Falls Through the Net

At its core, SOFT UK’s mission remains simple but profound: ensuring that no family facing a Trisomy 13 or 18 diagnosis feels alone. Every new resource, partnership, and awareness campaign contributes to that goal. Whether through a conversation with a parent, a training session with healthcare professionals, or a family day that brings people together, the charity continues to grow its reach while staying grounded in the community it serves. Reflecting on her first year, Paige summed it up best: “It’s amazing to see how much impact such a small team can have. And it feels like we’re only just getting started.”

If you would like to learn more about SOFT UK, explore resources, or get involved, visit www.soft.org.uk or follow the charity’s channels during Trisomy Awareness Month and beyond.