Alice A.

This Spotlight appeared in our January 2026 newsletter.

Please introduce yourself and tell us how you got connected to the Foundation.

Hello everyone! I am Alice, I live in NYC, and I have Type 3 VWD. Growing up had its countless health challenges considering I have three target joints. I have been a member of the Foundation since the very beginning and have been involved in many facets. I served as the first patient rep on the Board to help advocate for patient voices and experiences, I was one of the initial Co-PIs on the VWD patient registry where I helped build the database, and I started the online book club during Covid when in-person connection with others was challenging. I have a foundational degree in biochemistry and worked on cancer research at a top leading hospital in NYC, though I later had to change my career to software development and then project management to accommodate for joint issues. My new job allows me the flexibility to work from home, attend to my health appointments, take frequent breaks and travel when desired. I love this work-life balance and I’m always ready for my next adventure! I have many hobbies that keep me busy, including diamond painting, baking, cake decorating and – most of all – traveling. I adore spending time with my family and friends, and they are my “Why” every day!

Where do you live? What do you love about it?

I live in New York City! I simply adore NYC and so many things about it: its exciting energy, rich culture, many diverse neighborhoods and the feeling of endless opportunities. NYC offers so much: world-class museums and art galleries, classical ballet and opera, fun broadway shows… you name it. It also has plenty of beautiful outdoor spaces filled with glorious English gardens. The food scene is quite diverse. With more than 20,000 restaurants/cafés to choose from, you can experience a wide range of cuisine and never run out of choices. There’s never a dull moment here and if for any reason I miss an event, there will be many more events to choose from around the corner, and all year ’round. NYC turns into a magical place during Christmastime and there’s so much to do and see: the Rockefeller tree, Fifth Ave, holiday store displays, NYBG train show, The Radio City Christmas Spectacular with the Rockettes and list goes on! There is nowhere else I’d rather be for Christmas than in this beautiful wonderland city!

Where are your favorite places to travel and why?

My favorite places to travel are Italy (specifically Rome and Florence) and France (specifically Paris, Provence and Annecy). I love experiencing these old cities, their cultures and architecture, visiting their ancient ruins and museums, seeing how locals live and what their day-to-day life is like. I’ve learned how to speak and write in both Italian and French so it’s also fun to practice the language when I visit. Best of all, just absorbing it all by sitting at a café, eating a gelato or croissant and just experiencing “la dolce vita” or having a “je ne sais quoi” moment.

What inspired you to start Book Club? Do you have any special memories from the beginning? Those first few meetings were a lifeline during Covid!

We were at the beginning of Covid lockdown with no place to go and it was trying times for everyone. Living in NYC which was an epicenter was quite challenging. I was away from my family and friends for months. And seeing this vibrant city look and feel like a ghost town was surreal and scary. Being on the VWD Connect Foundation board as the patient rep at the time, I was thinking of creative ways on how we can bridge the distance among foundation members and allow them to “come together” amidst the lockdown. And so I thought of starting a book club. Our first book club was held on May 29, 2020 via Zoom, when we were first reading two books per month and then switched to one book monthly as Covid restrictions were lifted and people were returning to their normal lives. To date, we’ve read 70 books from a wide range of genres from historical biographies to fiction. We even had an author join us to discuss and read excerpts from her book. When you asked about my fondest memories, the answer was in the question: the word “lifeline.” It provided a safe outlet to meet regularly, the eagerness to see familiar friends and meet new ones, the distraction of reading a book and then discussing it while learning interesting insights shared by the group. It was quite cathartic and fun. In addition, it allowed me to get to know more of the VWD members better and have this shared experience during the harder days. For anyone reading this newsletter or if there’s anyone you know, feel free to check out our book club. We’d love for you to join!