A Foundation Building Strength (AFBS) is absolutely thrilled to present our NM Awareness Month Recap and look back on a truly impactful May! For families and individuals touched by this rare neuromuscular disease, awareness is deeply personal – it’s about sharing our stories, speeding up research, and ultimately, building a path toward effective treatments.
Our primary goal for this campaign was to spread awareness, educate the public about Nemaline Myopathy, and attract vital support for research. Last month, your incredible dedication during our awareness campaign helped AFBS amplify this message even more than we imagined possible, and we’re so grateful for every share, every pledge, and every conversation you sparked!
The NM Awareness Share-A-Thon
This year, the centerpiece of our campaign was the launch of our first annual NM Awareness Share-A-Thon, a virtual event that harnessed the power of community to spread understanding and raise vital funds for research aimed at finding treatments for Nemaline Myopathy.
The concept was simple yet innovative: similar to a traditional “fun run,” participants gathered pledges, but instead of miles, they were based on social media shares! From May 26th through May 31st, each time our dedicated followers shared, re-shared, and amplified our informative daily Share-A-Thon posts across their networks, they raised more money to support groundbreaking research! This collective effort led to record numbers of people liking, following, and donating, far exceeding our expectations!
Faces of NM: Community Stories Driving Awareness
Leading up to the Share-A-Thon, our “Faces of NM” series on the blog introduced readers to some of the diverse and incredible individuals within our NM-affected community. We were honored to profile:
One of a Kind Tessa
Meet Tessa, a 3-year-old from the beautiful Mediterranean island of Malta.
Audrey – A Texas Star Shining Bright
Get to know Audrey, a bright 6-year-old in Texas navigating life with NM.
Priscilla – A Faithful Heart & Curious Mind
Get to know 9-year-old Priscilla from Mason, Ohio!
Anthony – Navigating the World on His Own Terms
Get to know Anthony, a vibrant 32-year-old graphic designer from Haarlem, The Netherlands!
Liv – Finding Strength in Transition
Meet Liv, a thoughtful and resilient 13-year-old from Los Angeles, California.
Raising Awareness Through Sharing
These unique individuals then became integral to our daily Share-A-Thon posts, sharing their personal stories alongside informative facts about Nemaline Myopathy and how it affects the daily lives of the people who have it. The campaign also featured special messages from some of the researchers participating in AFBS-funded projects, wishing everyone a Happy NM Awareness Month and giving glimpses into their critical work.
What is Nemaline Myopathy?
Nemaline Myopathy is a rare neuromuscular disease that affects the body’s muscles, causing weakness that can impact essential functions like:
- mobility
- breathing
- speech
- swallowing
There is currently no treatment for Nemaline myopathy, but you can help change that!
Nemaline Myopathy Affects Individuals Differently
Nemaline Myopathy affects individuals differently, but muscle weakness is always present. Some people walk independently, while others need full-time support. Most experience weakness in the face, neck, core, and limb– and require personalized care throughout life.
Audrey uses a wheelchair for long distances, bipap for sleep, wears AFOs to stabilize her ankles, and has a g tube that she uses for extra hydration.
Priscilla manages NM with essential daily supports: a power wheelchair, communication devices, feeding tube, and a tracheostomy with ventilator.
The Science of Nemaline Myopathy
NM (also known as Nemaline Rod Myopathy) gets its name from the microscopic rod-shaped structures, called “Nemaline bodies” found within the muscle fibers of affected individuals. The rods are a key hallmark of the disease.
Nemaline Myopathy is linked to mutations in at least 12 different genes. Most cases with a known genetic cause are due to mutations in either the NEB gene (about 50% of all cases) or the ACTA1 gene (15-25% of cases.)
Nemaline Myopathy: Understanding Respiratory & Feeding Challenges
Individuals affected by NM often face significant breathing and feeding challenges due to the muscle weakness associated with the disease.
Difficulty swallowing can make it nearly impossible for some individuals to receive significant calories or hydration without the use of a G Tube or J Tube for feeding.
An inability to cough effectively can increase the chances of pneumonia so that even the common cold can be life threatening.
Nemaline Myopathy Awareness Day
For families affected by Nemaline Myopathy like, Tessa’s, Audrey’s, Priscilla’s, Liv’s, and Anthony’s, raising awareness isn’t just a day– it’s about advocating for their loved ones, acceleratingresearch, and building a path towards treatments. Click to read why they shared their stories and participated in our Share-A-Thon!
Driving Research Forward: AFBS’s Commitment
In addition to the several global research projects we are currently funding, AFBS has recently committed $2.5 million to funding cutting edge research over the next 3 years, and look forward to announcing a new round of research projects in the coming months! These significant investments are a testament to our ongoing commitment to finding effective treatments for Nemaline Myopathy. Thanks to your participation in NM Awareness Month, we’ll be able to accomplish even more!
Remarkable Results: The Impact of Your Support
The results of this NM Awareness Month campaign are truly heartening: our awareness posts and information about our Share-A-Thon were shared over 1800 times, reaching and engaging tens of thousands of people who had never heard of NM before! Together, we successfully spread awareness for Nemaline Myopathy to every corner of the globe and raised an incredible $22,000 from supporters worldwide!
This success is a testament to the power of a united community and the unwavering dedication to bringing hope and progress to those living with NM. Thank you to everyone who shared, pledged, and participated!
Missed the Share-A-Thon?
Don’t worry, it’s never too late to make a meaningful contribution to our ongoing mission to find treatments for Nemaline Myopathy!
Donate to AFBS: Your monetary gift will support critical research.
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 so we can connect you with valuable resources, support, and opportunities to get involved with upcoming research studies!