JENNA HOFFMAN

This Spotlight appeared in our November 2023 newsletter.

Where do you live? What is your favorite and least favorite thing about it?

I live in Canton, Ohio near the Pro Football Hall of Fame. Many people in Ohio complain about the weather being their least favorite part of living here, but I appreciate the season changes. The colorful fall leaves right now are beautiful!

What do you do for a living?

I’m a private piano teacher with about 35 students who come to my home for weekly lessons. I also offer group workshops and camps for my students. I work at a church part time as music director, pianist, and ministry coordinator.

What is something surprising about yourself you could tell us that people would never guess?

I have my motorcycle and boater’s license! I drive a small motorcycle around occasionally in the warmer months of the year and driving a jet ski is basically the water version!

How long have you been a member of the Foundation? What has being a member meant to you?

I’ve been a Foundation member since the first conference. Being a member means connection to me. It has connected me with amazing people – the other members! We share similar medical challenges, but I enjoy that we share similar interests and hobbies and get together through book club, craft club, the conference, and more. More recently, being a Foundation member has brought several young ladies with VWD and their families into my life, who I hope feel that they can ask me anything and that I can inspire them that you can be a perfectly “normal,” independent adult despite having severe VWD.

What is the first piece of advice you would give to someone who has been newly diagnosed with Type 3/severe VWD?

You are your best and strongest advocate, so learn as much as you can, and don’t be afraid to stick up for yourself and what you need. It is important for you to make your voice heard to doctors, insurance companies and legislators, as well as people at school, work, etc. about VWD and the care you need.