Supporting the Williams Syndrome Foundation: A Cause Close to Our Hearts

At Frederick R Miller Ltd (FRM), we care about our people, not just their work, but their lives. That means standing beside them through challenges and triumphs, and supporting the causes that mean the most to them. One charity we’re proud to champion is the Williams Syndrome Foundation (WSF) an organisation that provides vital support, guidance and research for families affected by Williams Syndrome across the UK.

Our connection to this charity is personal. It starts with Elvie Carpenter, one of our Directors, and her granddaughter Grace.

What Is Williams Syndrome?

Williams Syndrome (WS) is a rare congenital condition caused by a genetic deletion on chromosome 7. It’s non-hereditary and happens at random. In the UK, it affects around one in 18,000 people, a small number, but for those families, the impact is lifelong and complex.

The syndrome affects physical and cognitive development. Most people with WS have distinctive facial features, developmental delays, and mild to moderate learning difficulties. They may also experience heart problems, digestive issues, coordination challenges and a higher likelihood of anxiety or mental health difficulties later in life.

But it’s not just about the struggles. People with WS are often known for their warm personalities. They tend to be highly sociable, friendly, and talkative especially with adults. Many show a level of empathy and openness that’s rare and touching. Their outlook on life, despite the obstacles they face, is often full of optimism and joy.

Grace’s Story

Our involvement with the WSF began because of Grace. She was born in 2014, the granddaughter of Elvie Carpenter, and daughter to Amy and Dave (one of our Class 2 drivers). Grace arrived early and weighed just 4lb, a small but mighty baby from the start.

Due to her low birth weight, Grace had a hearing test at four weeks old. The results showed signs of hearing impairment. Then, at eight weeks, she was admitted to hospital with an umbilical hernia. During those visits, doctors discovered she also had a heart murmur, a sign that something more was going on. A specialist ordered a FISH test, a genetic screening, and the diagnosis came back: Williams Syndrome.

Like so many families who receive a diagnosis of this kind, Amy and Dave were thrown into a world they hadn’t prepared for. But rather than being overwhelmed, they made a decision to face it head on. They adopted the motto: “Sometimes the things we can’t change end up changing us.” It’s a sentiment that now runs through everything they do, and it’s helped shape how we support them and others in the WS community.

Raising Awareness, Year After Year

Williams Syndrome is still not widely known. Most people have never heard of it. That lack of awareness makes it harder for families to find understanding, services, and practical help.

That’s why we’ve made it part of our mission to support the WSF and the families they help. Since 2015, we’ve worked closely with the Foundation through one key annual event: Teddy’s Weekenders.

Teddy’s Weekenders: A Weekend with Purpose

Teddy’s Weekenders is a family fundraiser and awareness event held every year in Alton. It began in 2014 after a young boy named Teddy sadly passed away due to complications from WS. Steph, a mum to Phoebe with WS knew the family and wanted to do something to honour Teddy and raise awareness so she organised a fun day for families.

What started as a heartfelt local event grew into something much bigger. In 2015, Amy, Dave, and Grace joined the event for the first time. They found community, support, and purpose and they’ve been part of it ever since.

Elvie helps organise the event each year, working closely with other parents and volunteers. And as a company, FRM proudly sponsors the event and provides one of our trucks, which becomes the main stage, a striking centrepiece that’s become a familiar sight over the years.

The event brings together families from across the country. It features live music, food stalls, entertainment for children, raffles, and most importantly a space where WS families can connect. These events are more than just fundraising opportunities; they’re moments of recognition, joy, and solidarity.

As Amy and Steph explain:

“We are two parents of children with WS, Phoebe and Grace and we, along with our amazing families and friends, put this fundraiser on each year. In 2013, Phoebe was born and diagnosed early. A year later, Teddy sadly passed away, and that’s what first inspired us to start this event. Grace joined us in 2015. Her family connected with us, and since then, they’ve helped build what Teddy’s Weekenders has become. Our mission is simple, to raise awareness of Williams Syndrome and show the world how inspiring, joyful and positive these children and families are, despite the challenges. They face each day with a smile.”

The only break in the event’s run was during the COVID-19 pandemic. Since returning, it’s gone from strength to strength and this year is shaping up to be the biggest yet.

Support Beyond the Event

Our support for the WS community doesn’t stop with the summer fundraiser. At FRM, we also take part in national campaigns like Jeans for Genes Day, held every September. It’s a small gesture with a big impact, a chance for staff to wear denim, make donations, and help raise money for children living with genetic disorders.

We also look for other ways to raise awareness internally and externally. Whether it’s sharing Grace’s story with new staff, highlighting WSF campaigns in our newsletters, or helping to connect other families with the support they need, we do what we can to keep the message going.

Why It Matters

For us, this isn’t about ticking boxes or looking good on social media. This is personal. We see how Williams Syndrome affects one of our own, and that makes it real. But even if it didn’t, we believe in backing causes that bring people together, especially those that don’t always get the attention they deserve.

The Williams Syndrome Foundation plays a vital role for families across the country. It offers guidance, funding for research, and emotional support. It gives children with WS and their parents the tools they need to live fuller, more informed lives.

By supporting the foundation, we’re supporting real people like Grace, Phoebe, Teddy, and so many others who continue to inspire us.

Looking Ahead

We’ll keep supporting the Williams Syndrome Foundation for as long as we can. Whether it’s through fundraising, raising awareness, or simply being there for the families we know, this is a cause we’re proud to stand behind.

To Grace, Amy, Dave, Elvie and the rest of the WS community thank you for showing us what strength, warmth and resilience look like.

If you’d like to learn more about the Williams Syndrome Foundation or donate to support their work, visit: www.williams-syndrome.org.uk