My hope for the FSHD community this Advent season

Advent is the beginning of the church year for Christians. What better way to start the year than with a season of hope?

During Advent, Christians prepare for the coming of Jesus, whom we believe is the incarnation of God. He entered our world, becoming human, when he was born in Bethlehem.

It’s no accident that Christians chose the middle of winter to celebrate Jesus’ birth. Long before Christianity, people of all faiths observed celebrations on the winter solstice, hoping that the sun would return. The Catholic Church simply grafted Christmas onto pagan winter festivals.

Today, we know that the winter solstice is a natural phenomenon; once it passes, those of us in the Northern Hemisphere enjoy longer days, shorter nights, and warming temperatures. But the scientific explanation doesn’t detract from the sense of hope we Christians feel during Advent.

As we celebrate this season, I’d like to express a few hopes I have for those of us who deal with facioscapulohumeral muscular dystrophy (FSHD).

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For the community

First, as researchers continue to make progress in understanding the pathology of FSHD, I hope that treatment options, or even a cure, will become available sooner rather than later. With several clinical trials underway, a breakthrough may be imminent.

I hope that younger generations of people affected by FSHD will get involved. We need their energy and voices to advocate for services to meet our needs.

I hope to see more participation and support in the FSHD community. Creative solutions are being used that simply don’t get shared. We can all benefit from sharing effective hacks and successful strategies for navigating life with FSHD.

Finally, I hope for advancements in adaptive equipment to help enable all of us in the disability community to maintain as much independence as possible. We need more than wheelchairs and walkers. I hope that developments in robotics and artificial intelligence will lead to adaptations, such as exoskeletons, that were confined to the realm of science fiction just a few years ago.

And in my personal life

For me, 2025 has been a challenging year. I’ve lost a lot of ground to my FSHD. However, my faith and the blessings I enjoy every day give me hope for the future. Allow me to share just a few of those hopes.

I hope to continue writing for Muscular Dystrophy News Today. It’s been a blessing for me to share my FSHD journey with all of you, my readers. I hope my columns continue to resonate with those of you who have FSHD, and for those who don’t, I hope I can provide a better understanding of life with the condition.

I hope I can continue to walk a bit. I know at some point I’ll be in a wheelchair full time, but that’s a bridge I’m fighting as hard as I can to avoid crossing. As I struggle to move around, I acknowledge that letting this fight go and making the transition will be a relief in some ways. Still, I’m hoping to put that off for a while. It’ll be a monumental change for me, as well as my caregivers.

I also hope to find an adaptive device that will make it easier for me to use my right arm to perform daily tasks, such as dressing, eating, and brushing my teeth. These things have all become a challenge over the past few months.

Finally, I hope I can continue to play music. I’m getting ready for one last performance at a location I’ve been playing at since moving to Pittsburgh. Transportation, the building’s layout, and the difficulty in transferring from my wheelchair to the chair at the keyboard, among other factors, make this location challenging for me. I hope to continue performing at other facilities where I entertain.

I also hope to continue touching people’s lives through my Wednesday afternoon music breaks on Facebook. This is something I’ve been doing for almost two years. I don’t have millions of friends or followers, but I think music has lifted some spirits on social media.

Hope is the source of energy that enables us to dream of a brighter future for ourselves and our world. I hope each of you has your own hopes and dreams for this holiday season. Here’s hoping for a brighter future for all of us.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.