JESSICA WOLFE

This Spotlight appeared in our December 2024 newsletter.

How did you connect with the Foundation? 

I’ve been a Foundation Member since the beginning. I’m so proud to be a part of this community and this work!

Where do you live? What would you recommend a first-time visitor explore?

We live in Michigan with our sons Kadin and Reese, and two dogs. Any first-time visitor should definitely check out the Great Lakes… Lake Michigan is the best!

How many conferences have you attended, and what has your experience been like?

I’ve attended five conferences, including the first one, and have loved all of them. Meeting other Type 3s has been invaluable and this community is so encouraging and supportive. 

How was your experience on the Patient Panel at our Provider Education Workshop?

I was thrilled to be part of the Provider Workshop. It was really encouraging to see so many providers come together to learn more and share best practices about severe VWD. Being on the panel was a little scary, but I’m such an advocate at heart, I really wanted to speak up. I want doctors and providers to understand that we are experts in our VWD as well, and have our own lived experience that should be valued as much as their medical knowledge. We need to be a team and tackle this thing together. 

Did you learn anything new? 

From conversations with some providers who were there, I learned that there are sometimes things behind the scenes that may prevent them from giving the kind of care we are seeking. That kind of shared understanding builds empathy and bridges to collaborate moving forward. We can solve these problems together. 

Your husband Eric also attended the Workshop, as both a companion and the official event photographer. Eric, what has been your experience accompanying Jessica to Foundation events and being her support? 

I’ve grown in understanding of severe VWD from a science standpoint and from a far greater understanding of the hope of richness of life that can
be lived with thoughtful treatment plans and
encouragement from others in the community.

What was it like being behind-the-scenes as a photographer?

It was a privilege to watch the community of patients, caretakers and providers all come together in collaboration and desire to help grow forward in health. 

Thanks, Eric and Jessica!