Featured Fundraiser Lily, age 8, lives in Connecticut, and spends her time hanging out with her school friends, playing with her dolls, doing arts and crafts at home, and participating in Girl Scouts. She loves her family, visiting her grandparents, swimming, and her two cats, Muffin and Jag.
Lily also lives with NEB-related Nemaline Myopathy, a rare neuromuscular disease characterized by muscle weakness, particularly in the muscles closest to the body’s core. This weakness can make everyday physical movements, speaking, swallowing, and breathing significantly more difficult. With at least 12 known genetic variations of varying severity, NM affects everyone a little differently.
Navigating Nemaline Myopathy
For Lily, her first few years were marked by recurrent hospitalizations and illnesses. She used a G-tube for five years to ensure proper nutrition, relies on a BiPAP machine for respiratory support, and works regularly with physical, occupational, and speech therapists. To help manage her mobility, she wears AFO braces every day, has a full-time aide with her at school, and uses a wheelchair when traveling long distances.
Overcoming Misconceptions and Hurdles
Living with a rare condition comes with structural and social challenges. Physically, Lily faces difficulties keeping up with her peers when they play, she can’t play the sports she wants to, and it’s tough for her to get up to her bedroom on her own because of the stairs.
Socially, one of the biggest hurdles is public misunderstanding. Her mother, Sarah, notes that a major (and frustrating) misconception people have about individuals living with Nemaline Myopathy is “that they aren’t intelligent because of their trouble talking”. (Muscle weakness in the jaw can make speaking clearly difficult– NM has no cognitive effects.)
Despite these challenges, Lily continues to carve out her own space. As Sarah points out, “She is very determined and doesn’t let NM hold her back”.
The Meaning of a Treatment
For families living with NM, the research funded by A Foundation Building Strength (AFBS) represents real, tangible hope. When asked what a successful treatment would mean for their family, Sarah is direct: “everything! For simple daily tasks to be easier for her would be a miracle”. A breakthrough would mean “more independence, less fear of getting ill”.
For other families navigating the same path, Sarah offers a clear piece of advice: “Keep following your gut and fighting for what you need”.
Make a Difference… One Share at a Time!
Lily is participating in the Share-A-Thon with a personal fundraising goal of $500 to help raise money to find effective treatments. Achieving this goal is entirely possible with the support of individual donors, and getting involved takes only a few moments.
Here’s how you can support Lily and the NM community before the event wraps up on May 31st:
- Make a Donation: You can donate directly to Lily’s page or support any of our featured fundraisers. Remember, 100% of all donations go directly to funding specialized research, and 100% of our research is funded by individual donors like you!
- Start Your Own Page: It’s incredibly quick and easy to set up your own personal fundraising page to share with your friends and family.
- Share Our Content: Follow AFBS on Facebook and Instagram. Every time you hit the share button on our awareness posts, you help us educate the public and bring us closer to our goal.
🚨 Help Us Unlock the $25,000 Match
We need your help to cross the finish line. If our global community reaches 500 total social media shares by May 31st, it will trigger a $25,000 matching gift that will DOUBLE the impact of every donation!
Let’s support Lily’s determination. Head over to her donation page, share her story, and help us build strength today.
Together, we’re 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!