Edition 8 of the 'You are Strong' Newsletter from Harrison's Fund

In this month’s Ask Max, Maxine reflects on the importance of saying no. Between hospital visits, school meetings, and family life, it’s easy to forget self-care. But sometimes, pausing and rescheduling is the healthiest choice—for you and your child. Saying no isn’t failure; it’s protecting your energy for what matters most.

Today, on World Mental Health Day 2025, we turn our focus to a community whose emotional and psychological needs are often overlooked: children living with Duchenne Muscular Dystrophy (DMD) and their families. While advancements in medical care have improved physical outcomes, the mental health impact of Duchenne is profound and frequently invisible.

Living with Duchenne Muscular Dystrophy (DMD) presents unique challenges that ripple through every aspect of family life. The emotional and mental health toll can be profound, yet there is a powerful resource that families can draw upon to navigate these difficult waters. This resource is hope. It acts as a beacon, guiding families through uncertainty and hardship, helping them to maintain resilience and emotional well-being.

Living with Duchenne Muscular Dystrophy brings emotional as well as physical challenges. This blog explores practical mental health strategies for patients and families, from professional therapy and support groups to mindfulness, routines, and creative outlets. Discover how small, consistent steps can build resilience, reduce isolation, and nurture well-being. With the right tools and community support, families can foster hope and strength together.

Care defines us as parents of two boys with Duchenne muscular dystrophy. As their bodies weaken, grief is constant, yet so too is wonder: Oskar accepts with innocence, Theodor resists with fierce intelligence. Caring for them is humbling—an act of defiance and unconditional love, ensuring their spirits remain undiminished. The disease may take much, but it will not define them; their courage and will always shine through.

On a summer’s afternoon, lost in depression, a father imagines his son Theodor soaring through clouds like a superhero. The vision pulls him from despair, reminding him of Theodor’s fierce intelligence, courage, and defiance in the face of Duchenne muscular dystrophy. In his son’s gaze, he finds strength and hope, carried aloft by love. Theodor whispers the simple truth that restores him: “All will be ok, Daddy, all will be ok.”

Edition 7 of the 'You are Strong' Newsletter from Harrison's Fund

Thanks to your pledges, we’ve unlocked matched funding in the Big Give Christmas Challenge. Between 3–10 December, every donation will be doubled, helping us reach £12,000 to fund expert clinical psychology for Duchenne families.

When Austin began using a wheelchair, I feared it meant giving up. But what I saw instead was relief and freedom. No more struggles to keep up with friends, no more fear of falling. The chair gave him independence, safety, and dignity. For families facing the same stage, please know you’re not alone. A wheelchair isn’t the end—it’s a tool for inclusion and a better quality of life. Sometimes, embracing the next step opens doors we never expected.

Paul has been running for Harrison’s Fund for seven years. This October, he’s taking on the Royal Parks Half with his son Leighton, who will be completing his very first half marathon. Inspired by their friends Maxine and Austin, who live with Duchenne, they’re running not just for the challenge but to raise funds for Harrison’s Fund’s Chrysalis Grants, which provide expert clinical psychology support to families facing this devastating diagnosis.

Michael McGrath MBE, founder and CEO, Muscle Help Foundation, sets the scene on a substantial body of work driven by our friends at The Muscle Help Foundation in partnership with the University of Hertfordshire, which looks at how we can better understand and support families through grief and bereavement. Reproduced with permission, copyright Rare Revolution Magazine.

Edition 6 of the 'You are Strong' Newsletter from Harrison's Fund

Caring for Austin, who has Duchenne, can be overwhelming. Max shares her experience with burnout and offers practical tips—from short breaks to celebrating small wins—to help carers cope and find balance.

Edition 5 of the 'You are Strong' Newsletter from Harrison's Fund

This month in Ask Max, Maxine shares her family's honest experience of taking part in a Duchenne clinical trial for over eight years. From early starts and invasive procedures to the strength of community and the hope that fuels every visit—this is a powerful insight into what trials truly mean for families.

Edition 4 of the 'You are Strong' Newsletter from Harrison's Fund

School transitions can be exciting—and overwhelming—especially for families navigating Duchenne. This month in Ask Max, our Family Support Advisor shares her personal experience, tips for a smoother transition, and a gentle reminder that you’re not alone. From EHCP updates to emotional prep, Maxine covers the challenges and the hope this season brings.

Episode 1 of the freshly redesigned Newsletter from Harrison's Fund