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Dear Community,
When we think about Father’s Day, we often think simply in terms of the day being about the dads in our families and social circles. But in a community like ours, where everyone is affected by a rare genetic brain disease, Father’s Day can become much more complicated.
It is not just about dads anymore. It is about sons, brothers, uncles, husbands, cousins, stepdads, nephews, partners, ex-partners, grandads and anyone considered to be a ‘father figure’ by someone else. The important point isn’t about the name we call that special someone. It is about how we acknowledge someone we see in that way, who plays a special role in our lives. It’s also about boys still growing up and men alike, facing futures that may feel uncertain or frightening.
Some men within our community may be living with a diagnosis themselves, trying to process the enormity of what that means. Some may be caring for a child, sibling, partner or parent whilst also carrying fears about their own future. Some may never have the opportunity to become fathers. Some may be facing challenges that most of us will never have to face. Many families will be remembering men and boys they have lost far too soon.
Father’s Day doesn’t only affect fathers, or even men. It also affects the women who love them. Mothers caring for sons, daughters missing their dads, sisters worrying about their brothers, partners and friends navigating uncertainty alongside people they love. Grandmothers, aunts, nieces and friends whose lives are shaped by the men they love, have lost, care for or worry about every single day.
For some, Father’s Day may also be a day of remembrance, bringing thoughts of fathers, sons, brothers, grandads and other loved ones who are no longer here. Grief has a way of showing up when we least expect it and special days and anniversaries can often bring those feelings closer to the surface.
Rare genetic conditions do not affect just one individual. Their impact ripples through entire families, touching relationships across generations.
And whilst for some, the day is a celebration, for others it can bring fear, grief, uncertainty or a quiet ache that is difficult to put into words. There is no right or wrong way to feel at times such as these.
We know that many men struggle silently. Men are significantly less likely than women to reach out for mental health support. For many, identity can become closely tied to being a provider, a protector or the person others depend upon. Throughout life, men often receive messages about “being strong”, are told to “man up”, or hear that “boys don’t cry”. Many were never given the words to talk about complex emotions such as grief, fear, vulnerability or inadequacy. There can also be a powerful urge to suppress difficult feelings and avoid becoming a burden when everyone around them is already dealing with so much.
So, to every man in our community, I want to say this: the idea that strength means facing everything alone is simply not true. Real strength is not the absence of fear, grief or vulnerability. Real strength is facing what is happening to you and the people you love with honesty and courage. Sometimes that means being able to say, “I’m not OK.” By sharing your struggles, you give others the opportunity to help carry the weight. You create deeper connections and allow your loved ones the gift of being able to support you, too.
Support does not always have to mean formal counselling, although therapy can be enormously helpful for many people. Sometimes support is a conversation, a check-in, a walk with someone who understands, attending a support group or community event, or a friend asking, “How are you really doing?”
This Father’s Day, try to give yourself permission to feel whatever comes up for you. Make space for the difficult emotions as well as the happy memories. Both can exist at the same time.
To every father, son, brother, uncle, stepdad, nephew, grandad and father figure in our community, and to every mother, daughter, sister, aunt, niece, partner, cousin, and friend walking alongside them – please know that your feelings and your wellbeing matter. This disease does not discriminate. It touches lives in countless ways and affects entire families.
At Alex TLC, we are here for you. Our community understands. If there’s one thing you can do this Father’s Day, consider giving yourself the gift of connection. Reach out. Let someone in. We are here to support you.