For 18-year-old Ellary, life is currently a study in dualities. The Rhode Island resident is balancing her final year of high school with her first year of college, navigating a curriculum focused on digital media production. Her goal is clear and professional: to transition into a four-year marketing program and eventually “create marketing campaigns with disability representation”.
When she isn’t studying, Ellary is often found in her room, a space that has recently doubled as a recording studio. A lifelong musician who plays the violin and loves to sing, she recently launched a TikTok account to share song covers. “I figured, because I sing in my room all the time, why not record it and post it online?” she says. The account is more than a hobby; it’s a deliberate act of visibility. “I also saw it as a good opportunity to help normalize disability… I have always wanted to build a presence on social media to spread awareness and educate people”.
Living with Nemaline Myopathy
While the physical logistics of her day-to-day life require significant nursing care, Ellary identifies the social barriers as some of the most persistent. Specifically, the weakness in her jaw muscles makes it impossible to close her mouth, resulting in a speech impairment. “It can make it hard to talk to people and make interactions awkward if the person I am talking to doesn’t understand me, but doesn’t let me know,” she explains. To counter this, she has made it a personal goal to be more outgoing, using her TikTok platform to answer questions about her disability and bridge the gap between curiosity and understanding.
Redefining “Inspiration”
Ellary is candid about the misconceptions that follow a rare disease diagnosis. She is quick to push back against the “pity” often directed at the disabled community. “Although things can sometimes be hard with a disability, our lives are far from sad,” she says. “We all have many opportunities and are able to do a lot of things non-disabled people do; we just need a little more help”.
Equally frustrating to her is the tendency for non-disabled people to view her as an “inspiration” simply for existing. “I wish that non-disabled people did not see people with NM, or any disability, as an inspiration for doing normal day-to-day activities,” she notes, pointing out that such labels can feel reductive rather than empowering.
A Future Focused on Independence
As an AFBS Youth Ambassador, Ellary is a key voice in the mission to find effective treatments. When she imagines a breakthrough, she thinks about the nuances of independence—the ability to live without life-supporting equipment and the confidence that would come from clearer speech. “It would also allow me, with jaw surgery, to have clear speech and feel more confident when having conversations with people,” she says.
Ellary’s mother first connected with A Foundation Building Strength (AFBS) via a Facebook group over a decade ago, and today, Ellary is taking that involvement to a new level. As a Featured Fundraiser for the 2026 NM Awareness Share-A-Thon, she is aiming to raise $1,000 through her TikTok community.
“Although it may seem like we are limited, we can do almost anything we set our minds to if we find a way,” Ellary says. “We do not let our limitations get in the way of doing something we have always wanted to do or try”.
Join Ellary: The Second Annual NM Awareness Share-A-Thon
From May 18th to May 31st, AFBS is holding its second annual Share-A-Thon to accelerate the path toward treatments. You can help Ellary reach her fundraising goal and support the broader NM community in three ways:
- Make a Donation to Ellary: Every dollar fuels the research necessary to bring life-changing treatments to clinical trials.
- Create Your Own Fundraising Page: Join Ellary as a fundraiser to share your story and help us expand our reach.
- The 500-Share Challenge: Follow AFBS on Facebook & Instagram and share our special Share-A-Thon content. When we reach 500 social media shares during the campaign, it will trigger a matching gift of up to $25,000!
Together, we are building strength.
A Foundation Building Strength (AFBS) is a nonprofit organization dedicated to accelerating the development of treatments for Nemaline Myopathy. Our mission is to fund cutting-edge research to find effective treatments while providing resources and a strong community for families affected by NM. We are proud to be at the forefront of driving Nemaline Myopathy research breakthroughs forward through collaborations with research teams across the globe.
Donate to AFBS: Your monetary gift will support critical research and provide vital resources for NM families.
Stay Connected: Sign up for our email list to receive the latest updates from AFBS and learn more about NM research. Are you an individual or a caregiver of an individual affected by NM? Fill out the AFBS Contact Survey to be connected with valuable resources, support, and research opportunities! Visit our “Get Involved” page for even more ways to connect!