The Big Lesson I learned at Rare Disease Day 2019


It was a chilly, but sunny day in Boston, as the crowd started to grow and the speakers boomed to signal the beginning of what would become another platform for me to connect with other young adults living with Muscular Dystrophy and related diseases.

This was another moment to look out into a sea of people and realize I was never alone. This was another moment to pause. Inhale. Exhale. This was another moment to share my story of what it’s like living with a chronic illness and how events like this one can help reawaken the desire to keep pushing past the pain. This was another reason to get up in the morning. This was my moment.

This month marked the 11th year of the annual Rare Disease Day in Boston, Massachusetts. The event was a huge success and of course, I was front and center for all of the excitement of the day. Here’s a snapshot of the what Rare Disease Day is all about:

Every year, MassBio celebrates Rare Disease Day by bringing together nearly 300 industry stakeholders to elevate public understanding of rare diseases and call attention to the special challenges people with these ailments face.

The event convenes patient organizations, government agencies, medical researchers, life sciences companies and patients to share stories and recognize the great work being done in Massachusetts and beyond to provide new treatments and cures for diseases that affect nearly 30 million Americans. - source

This event provided an opportunity for researchers, pharmaceutical companies, families, friends, individuals with rare diseases to come together to exchange ideas, share stories and continue supporting one another on the journey to better treatment options, spreading awareness and ultimately, working to find cures for the many conditions represented that day. I also have to give major kudos to the event organizers who ensured that the entire conference was disability-friendly with ramps and plenty of room for wheelchairs, scooters and other vital equipment.

The highlight of the event was being a part of a panel tasked with answering questions and sharing advice for how we live daily life. It was an opportunity to meet new people and create more exposure for my brand Girls Chronically Rock, but most importantly, it was an opportunity for each panel member to share their story. It’ such a milestone for me to be in this space where I feel confident, comfortable and compelled to talk about my condition and what it’s like to live with Muscular Dystrophy.


Overall, the event was awesome, and I hope to get invited again to participate and attend next year. The event was just another reminder that our stories have meaning and living with a chronic illness doesn’t have to mean living a boring or uneventful life.

Rare Disease Day 2019, reminded me of one simple, but critical lesson: there’s so much inside of you. Take the time to share it!


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