Harneet Sandhu balances a full life. She’s a university student studying criminology, an avid fan of arts and crafts, and the proud parent to an adorable puppy named Mia. She’s also someone who requires around-the-clock care, navigating a world that often struggles to see past her power wheelchair and ventilator.
As a featured fundraiser for this year’s Second Annual Nemaline Myopathy Awareness Share-A-Thon (running from May 18th to May 31st) Harneet is using her platform to educate the public and raise vital funds for research.
The Early Signs and Diagnosis
Harneet’s journey to learning she had Nemaline Myopathy began when she was just three years old, when her mother noticed subtle physical changes. “When I would fall while walking, I wouldn’t stand back up,” Harneet recalls.
Shortly after, a routine dental surgery revealed the underlying complexity of her condition. Harneet remained unconscious for three days following the procedure due to an undiagnosed need for mechanical ventilation. This critical event accelerated her medical testing, and a subsequent muscle biopsy provided a definitive diagnosis: NEB-related Nemaline Myopathy.
Nemaline Myopathy is a rare congenital neuromuscular disorder that causes muscle weakness, severely weakening the systems required to move, breathe, swallow, and talk.
Navigating a Complex Daily Routine
Because NM affects the muscles throughout her body, Harneet relies heavily on assistive technology to maintain her quality of life and independence.
“Due to Nemaline Myopathy, I require care around the clock,” Harneet explains. “My respiratory muscles are extremely weak, which means that I have a tracheostomy and use a ventilator 24/7, and because of this, I need a caregiver present in case I need to suction (clear the airway) or if my ventilator disconnects. I need assistance to use the bathroom, shower, get in and out of bed, etc.”
Her mobility and nutrition also require specialized tools. “I use a power wheelchair to get around because I am unable to walk,” she says. “I also have a gastro-jejunal feeding tube to help with nutrition because it is difficult for me to eat enough due to weak stomach muscles.”
Challenging Misconceptions and Ableism
While managing her physical health requires constant vigilance, Harneet notes that some of her steepest hurdles are social rather than medical. Specifically, she frequently encounters the frustrating public assumption that physical disability equates to cognitive impairment.
“NM does not affect the brain or intellectual abilities,” she clarifies. “I have had people assume that I am unable to engage in conversations,” she adds, noting instances where individuals would speak to her mother about her while Harneet was sitting right there.
This systemic misunderstanding has even followed her into her academic pursuits. “In university, I have had professors who viewed my accommodations as an advantage over other students,” Harneet shares. “It is disappointing that even today, these are not uncommon situations.”
A Shared Hope for the Future
Despite these systemic obstacles, Harneet remains focused on her goals. One of her biggest dreams is rooted in what scientific research can unlock for the entire NM community.
“I hope for treatments to help maintain muscle strength and slow progression to allow individuals with Nemaline Myopathy to live longer and have a better quality of life,” she shares.
Make a Difference… One Share at a Time!
Harneet’s resilience underscores the urgent need for scientific advancement. The 2026 NM Awareness Share-A-Thon is officially underway, and participating is a quick, easy way to support her advocacy. 100% of all donations go directly to funding specialized research, which is entirely funded by individual donors like you.
Here is how you can take action before the campaign ends on Sunday, May 31st:
- Support Harneet’s Fundraiser: Make a direct donation to Harneet’s personal fundraising page to power the search for effective treatments.
- Create Your Own Page: Setting up a personal fundraising page to share with your family and friends takes only a few moments.
- Share Our Content: Follow AFBS on Facebook and Instagram. Every time you hit the share button on our awareness posts, you help dismantle the stereotypes Harneet struggles against while expanding global awareness.
🚨 Help Us Unlock the $25,000 Match
We have a crucial community goal this month. If we reach a collective total of 500 social media shares by May 31st, it will trigger a $25,000 matching gift that will DOUBLE the impact of every single dollar donated!
Let’s support Harneet’s determination. Head over to her 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!