Dr. Lisa Wolfe – A Fierce and Empowering ALS Advocate
We sat down with this year’s Hope Through Caring Award Honoree, Lisa Wolfe, MD, of Northwestern Medicine, who will be recognized at our Hope Through Caring Gala on May 21. A world-renowned pulmonologist, Dr. Wolfe is a valued member and advocate in our community, continuously inspired by and a strong believer in empowering patients and their families. Her inspiration comes from providing structure and options to patients and their families as a part of an integrated medical team that helps them from the initial diagnosis throughout the disease.
Suzanne, the wife of an ALS patient of Dr. Wolfe’s for nearly 17 years, puts it another way: “As a brilliant and intuitive pulmonologist, Dr. Wolfe is a tireless advocate for her patients.” She adds, “Dr. Wolfe has been the fiercest of generals on the ALS battlefield. We will always gratefully and confidently follow where she leads.”
Dr. Wolfe explains, “I’m a pulmonologist so you would assume that the work that I do is just with the lungs. Our training is a lot broader because we spend a lot of time in the intensive care unit, and we see a lot of people who are in crisis, or they are at end stage of a disease. Often, there hasn’t been a lot of structure or a lot of planning for a crisis. One of the things that we’ve learned is that crisis is not necessary. Over the years, I became very committed to wanting to be a part of a bigger team that could do integrated planning with patients so that they would never feel that they were in that kind of disarray or panic without any structure or understanding of what the disease process was going to look like.”
About her work at the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine, Dr. Wolfe adds, “I am very privileged to be able to work with a team that has a vision that is very similar to mine. We meet with patients and families from diagnosis throughout the course of the disease. Our team is there to empower those families and those patients. We want them to have ownership, structure, and control over their lives and over the disease process. It’s inspiring because we see how patients and families step up to these challenges. That’s the thing that allows you to sustainably do the work because if you don’t feel inspired by it, you wouldn’t do it this long.”
Dr. Wolfe discusses the important role that the Foundation has played in empowering patients and their families, beginning with the structure of the Foundation: “When you’re in academia, you’re used to everything coming from the top down. And that type of structure can create a disconnect between how you function as a physician and how you advocate for your patient. The Les Turner ALS Foundation takes that structure and completely turns it upside down. The experience of patients and families informs the top about what the needs of the community are and what the structure should be. This tells us how we should perform. This is the model that everything needs to look like. We need ALS centers that are centered around the patient, not around the medical team. The Les Turner ALS Foundation knew that in the 70s! It is a privilege to be able to work in a system that understands this fundamentally.”
Dr. Wolfe also points out the benefits of acting locally in addition to nationally. She says, “Not only do we get a sense of what needs to happen, but we also get a sense of what it’s like in real time for the people in this community, and we don’t lose perspective. There are so many other groups that have a seat at the table nationally, but because they lack local perspective, they lose touch. We are blessed that not only can we help to set a national agenda, but we also don’t lose touch locally. And that’s important.”
During her tenure over the last 20 years, Dr. Wolfe has seen many things change in the ALS world, as well as what has remained constant: “The biggest thing that I’ve noticed is the increase in the number of treatments and in the number of opportunities to participate in research for treatments. The field has exploded.”
She adds, “What has stayed constant is how our multidisciplinary team approaches a person with ALS. We look at all options. Our answers are always proactive, interactive, and empowering. It’s knowing to say to a patient that there is always something empowering that you can do. We understand the problem isn’t that you’re losing speech, it’s how are we going to start to do your voice banking. What are we going to do to start your interactions with the tech center so we can look at speech alternatives? The answer is always this is what we’re going to do now, and this is what we’re going to do next. These are your options for moving forward. You have something you can do. You are empowered to make change. Our job is here to help empower people and their families living with ALS. And, if we’ve done that, we’ve done our job right.”
Dr. Wolfe’s impact on the ALS community is best stated by her patients. Suzanne adds, “Simply put, Steve wouldn’t be here if not for Dr. Wolfe.”
Join us on May 21 at the Hope Through Caring Gala to honor Dr. Wolfe for her patient advocacy and tireless work with the ALS community.
