Hometown: Princeton, New Jersey

Age: 38

Diagnosis: LGMD 1D

When were you diagnosed? It took me close to 25 years to receive a diagnosis despite years of different genetic tests and meeting new doctors. I finally received confirmation of LGMD in 2023.

What has been the most challenging part of your disability? Looking back at my youth, I see that being teased for my physical limitations certainly had a lasting effect on my self-confidence and the way I view myself in the world. And more recently, the day-to-day activities have been getting harder; for example, dressing, driving (although non-existent now), and bathing independently. People say asking for help is easy, but it belittles your pride.

What has been the best part about being in the community? I've found much solace in knowing there are people out there who get it - they know how I feel, and I don't have to explain myself. The "community", your "village", your "tribe" lifts you when you're down.  I've learned so much from the support groups I've formed in person and online.

What has been the greatest achievement with your disability? My disability has never stopped me from pushing forward. It did not prevent me from going to college, entering the workforce, or starting my own family.

Advice for other individuals with disabilities?  You can be dealt a crappy hand of cards in life, but the only thing that matters is what you make of it. Never stop moving towards that next thing you want to accomplish in life.

Fun Fact: Be the change you want to see in the world. I started an adaptive product blog as a "one-stop shop" because I became frustrated that I constantly had to troll the internet for the devices I needed to maintain an independent life. I plan to share this with as many people as possible and pay it forward to my community.