Eli Faymonville
This Spotlight appeared in our November 2026 newsletter.
Where do you live? What do you like/dislike about it?
I live in Indianapolis, IN. Compared to what I grew up around, I’m thrilled to have things to do and places to go to past 9pm, but I do miss the stars and the water of the Upper Peninsula.
What are some things you like to do for fun?
I love the one jazz club we have downtown, and I continuously need more space on the bookshelf to accommodate my reading obsession.
Any favorite foods?
Since I moved to the southside of Indianapolis, I’ve discovered the beauty of lahpet, a fermented tea.
What is your favorite holiday and why?
Christmas! I have this list of Christmas presents I continuously add to all year for my friends and family. I love the idea of reaching deep into your bag of how well you know someone and find the most niche, meaningful gift possible.
What has been your favorite travel adventure?
Every time I’m at my friends’ place in Harlem (I try to go once a year), they shave my head on their roof. This is the only way I get a haircut; I haven’t paid for a haircut in years. I don’t get it cut every time I’m there, only when the curls start going over my eyes.
If you could vacation anywhere, where would it be and why?
Despite the wicked and wild experiences I had in college in France, I would love to go and take a train around the French country. I would most notably use the trip to fill bags to bring back realia (authentic cultural objects) for the classroom, but the number one place that’s been on my list for quite a while is to visit the Amanita fresco (a late 13th century wall painting inside the medieval Plaincourault Chapel) in the village of Mérigny.
How did you get connected with the Foundation?
The amazing Hemophilia Outreach Center in Green Bay got me connected with the Foundation.
How many VWD Connect Conferences have you attended?
Two summer Conferences (2023 and 2024) and the 2026 Provider Education Workshop participating on the patient panel.
What is your most impactful memory from a VWD Connect Conference?
Never in my life had I met another person with VWD III. It was here at the conference where I got to express a part of my life I’ve never had the chance to do so fully and wholeheartedly. It felt like a mirror into the future of sorts; I saw myself in all of these people and was able to learn about what’s coming my way and the best ways to deal with it. At the same time, it was the first time I could be open about the disease and not expect a bubble wrapped energy in response.
What do you like the most about the Conferences?
I love the chance to connect with those whose Venn diagram of living with the disease and living as if we don’t have it overlap just as much as my own. They’re fantastic for seeking advice, solace, and creating bonds
unlike any bond you’ll be able to make outside of them.
You also just participated on the Patient Panel for the 2026 Provider Education Workshop – any thoughts about that event or the experience of being on the Panel?
I’m just very grateful for the opportunity and was thankful to continue to make brilliant connections in the industry and Foundation. (Editor note: to read about what Eli had to say on the panel, CLICK HERE.)
Looking ahead, any thoughts about what the Foundation or the world of severe VWD may look like in the future?
I’d love to see international cooperation, maybe branching out to other countries. This is also a topic I’d love to hear about at the summer conference; traveling abroad with product/sourcing product abroad. It’s the reason none of us can do Greenpeace or Peace Corps, or go teach English in another country, it’s the one obstacle I haven’t been able to surmount with the disease.
Any last thing you would like to share?
Thanks for everything you do. •