Rare Day In My Life: Growth Through Change Part 6

For a large portion of my life, I didn’t feel like my ideas and beliefs were truly heard. Sure, when I was younger, people would tell me my big idea was great because they didn’t want to upset the boy in the wheelchair. They were like a parent who tells their toddler their drawing is amazing and puts it on the fridge. But just like when I began as a Community Ambassador at Jett Foundation, Amicus Therapeutics truly felt different – they listen and utilize my skills!

I have been working at Amicus Therapeutics, a company that develops medicines for rare diseases, for over 6 years now. Team Amicus was one of the first groups of people to listen to and help foster my ideas because they believed in me, not because they felt bad for me. It has been quite a journey – from starting out as an intern for Patient & Professional Advocacy and Investor Relations to transitioning into the IT department and finally becoming the Head of Digital Employee Communications and managing my own intern. I truly came full circle in my journey! So, what makes working at Amicus the most enjoyable job of my life? Well, the mission to always put our patients first has really made my job feel more like my own mission in life! As an intern, I was tasked to plan CabaRARE, a concert for employees on Rare Disease Day where I invited talented musicians and singers who live with rare diseases to perform and share their stories. In addition to that experience, every month I would have the unique opportunity to listen to amazing advocates in the rare disease community share their experiences, and I would feel reinvigorated. 

Like the custodian at NASA who always said his job was to help put an astronaut on the moon, my job was to develop treatments for people living with a rare disease – even if I was only playing my small part to maintain our culture. Speaking of culture, I have never worked with any team as caring, accepting, and passionate as my colleagues at Amicus. I have the wonderful opportunity to work at a company where the CEO would eat lunch with me on my first day. Where I would plan a company-wide event as an intern. Where my coworkers would help me fundraise to purchase an adaptive piano for my friend Aaron whose progressive illness meant he was no longer able to play a traditional piano. Where my friend and coworker would volunteer to illustrate my upcoming children’s book. Where my boss would become one of my best friends. And where everyone would reach out with kind words while I was in the hospital, and inspire me to start writing #RareDayInMyLife, the very story you are reading right now!

I have had many amazing projects that I have played a part in over the past five years, but three stand out in my memory. The first was creating Amicus Cares, an employee-focused initiative that helped employees transition to working from home at the start of the pandemic. I utilized my own experience of working virtually at Amicus since I was an intern, along with my passion for using technology, to create an internal social network and virtual office experience with a focus on family, self-care, and optimism. Second, I am proud of crafting a communications infrastructure that empowers employees to be creative and develop a variety of engaging content on their own. Before that point, I would have to do most of the creation myself, so empowering employees allowed me to collaborate with many different functions and do something unique every single day of the week. Third, I am humbled to have had the opportunity to reinvent our employee volunteering program called Healing Beyond Disease™ for virtual volunteering and to start an employee resource group called Disability & Rare Advancement in the Workplace (DRAW) to draw attention to the needs of employees living with a disability or rare disease.


Working at Amicus truly made me into the strong person I am today! It helped me grow and evolve as a leader in both my career and my personal inclusion initiatives. My message to you – don’t let anyone tell you that your ideas are meaningless or too big. And take every chance you get to prove yourself, and transform the ideas you dreamed, into reality!


Anthony DeVergillo

Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne muscular dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for many who live with a rare disease to be fully included in society.

Anthony’s goal for #RareDayInMyLife is to not only share his challenges and experiences with Duchenne, but to allow for others to share their story for the world to read. He hopes that sharing #RareDayInMyLife will better educate the communities around us in order to be more inclusive of people who live with a disability or rare disease.