Faces of NM: Anthony- Navigating the World on His Own Terms

Community Spotlights May 12, 2025May 14, 2025

Meet Anthony, a 32-year-old graphic designer from the vibrant city of Haarlem, The Netherlands, who approaches life with a practical mindset and a genuine enthusiasm for connection and exploration.

Understanding Nemaline Myopathy: Anthony’s Perspective

For those unfamiliar with Nemaline Myopathy (NM), it’s a rare congenital neuromuscular disease, rooted in genetic mutations on one of 12 known genes (Anthony carries the NEB subtype passed down from both parents). NM primarily affects the muscles, leading to varying degrees of weakness that can impact movement, speech, swallowing, and breathing.

For Anthony, his journey with NM began shortly after birth. As his caregivers noticed he was weaker and more “floppy” than typical newborns, the reality of his condition began to unfold. At just a year and a half old, a severe bout of pneumonia led to a life-altering event: a tracheostomy. At the time, Anthony was the youngest person in The Netherlands to undergo this procedure, a testament to the early and significant impact of NM on his respiratory system.

Beyond Diagnosis: Anthony’s Fulfilling Life in Haarlem

Anthony’s life in Haarlem is characterized by a purposeful blend of professional engagement and personal fulfillment. He finds satisfaction in his work in nearby Alkmaar, and loves his job as a successful graphic designer.

Finding Joy and Connection Through Hobbies

Beyond his professional endeavors, Anthony actively cultivates a rich social life. He enjoys “grabbing myself a beer or having myself a trip/event with friends,” with his weekly visits to a local craft beer store serving as a key social outlet, fostering a close-knit community around shared interests. In his downtime at home, Anthony enjoys unwinding with video games, immersing himself in the world of comic books (a self-proclaimed “huge Marvel fan”), and occasionally tackling the intricate projects of large, complex LEGO sets. These hobbies offer him a space for relaxation and creative engagement.

Exploring the World: Adventures at Home and Abroad

Travel is a significant aspect of Anthony’s well-rounded life. He embraces adventures both within the Netherlands and further afield, making a conscious effort to “travel a lot, as I can.” Just last year, his adventurous spirit took him to New York City, where he had the special opportunity to connect with AFBS Youth Ambassador Greta Baier and her family, including AFBS Board Member Lyn Baier. Looking ahead, Anthony has an upcoming trip planned to the UK, with Bristol being his destination. His specially adapted van, affectionately chronicled on his Instagram account, @the.invincible.iron.van, is instrumental in facilitating his mobility, enabling him to navigate his professional and social commitments, as well as his passion for seeing new places.

Navigating Daily Life: Support Systems and Self-Sufficiency

Living with NM means Anthony relies on a ventilator for breathing support throughout the day, as his independent breathing capacity is limited. He also utilizes an electric wheelchair for mobility and a Dynamic Arm Support that aids in tasks like eating and drinking. While his childhood was marked by significant respiratory challenges, including “a lot (some severe cases) of pneumonia” due to his difficulty coughing, Anthony notes that as an adult, he is “rarely ill.” He has proactively integrated the necessary supports into his daily routine, allowing him to maintain a remarkable degree of self-sufficiency. He also benefits from a dedicated team of caregivers, including family, which provides essential assistance while allowing him to carve out a life on his own terms, even managing personal care tasks independently with the right aids.

Raising Awareness: Anthony’s Motivation for Joining the NM Share-A-Thon

Anthony is participating in the AFBS NM Awareness Share-A-Thon with a straightforward intention: to increase understanding of a condition that isn’t always widely known. “I want to let the world know what I have,” he explains, highlighting his pragmatic approach to sharing his experience. He also finds motivation in the ongoing research efforts within the NM community.

Anthony’s Message: Living Fully and Raising Awareness for NM

Through sharing his experiences, Anthony offers a candid glimpse into a life shaped by NM but defined by his active participation in his career, vibrant social connections rooted in shared passions like craft beer and Marvel, personal hobbies like gaming and LEGO building, and his determined pursuit of travel. He demonstrates a quiet determination to navigate his world on his own terms, embracing the supports that enable him to live a full and engaged life.

Join the Movement: Support NM Awareness and Research

You can support Anthony’s efforts to raise awareness and funds for vital Nemaline Myopathy research through the NM Awareness Share-A-Thon!

Make a pledge to support Anthony’s fundraising efforts here! Every contribution helps advance the search for treatments.

Join Anthony and others in making a difference! Create your own fundraising page for the Share-A-Thon and encourage your network to get involved: find out how here.

And don’t forget, you can also support the cause by sharing A Foundation Building Strength’s special NM Awareness content on Facebook and Instagram from May 26th to May 31st. Every share helps amplify awareness and contribute to the collective impact of the Share-A-Thon!