Veronique Enos Kaefer works as Vice President of Community Engagement at The Michael J. Fox Foundation for Parkinson’s Research where she has worked since 2001.
I work with the Parkinson’s community. I started at the Foundation’s beginning, and we were so little, and so excited the first time we did a request for applications. As of 2022, have given $1.5 billion in research! We’re the largest nonprofit funder of PD research. The price tag of getting to new treatments is high and it takes a lot to get to cures, so I’m proud of the fact that we leverage those resources for research, and that so much progress is being made in the field. And more people in the community are getting engaged and involved.
In line with our James Bond theme at KiMe, Veronique has been assigned agent status 005: Research Organization for her determination to find a cure for Parkinson’s. There are seven total “00” status agents in this interview series.
In my role, I try to help the patient community engage in whatever way is right for them, whether they want to be part of Team Fox, where they might organize an event flipping pancakes or running a marathon, whether they become involved in research, or in public policy advocacy, or with fundraising and giving directly. I speak with the Parkinson’s community and I work individually with patients and families. I work closely with The Michael J. Fox Foundation’s Patient Council, a team of 35 experts and advisors. They are people living with Parkinson’s within all different professional sectors, experiences, and ways that they’re involved in making a difference for Parkinson’s
Our goal as an organization is to find better treatments and a cure for people living with Parkinson’s disease through a strategic research funding program. We have seen so much progress in the Parkinson’s research space, with new treatments coming to market and many potential pathways for new therapies.
We also know that when someone is diagnosed with Parkinson’s, we are often, the first stop that people make looking for resources and for a place to learn what this is going to mean for their lives. We feel ethically that we need to have the best resources possible on our websites. So, we provide tools and resources guides for many aspects of living with PD. There is a guide for people who are newly diagnosed with Parkinson’s and others for living well with Parkinson’s Disease all along the way.
We created an online social media platform called the Parkinson’s Buddy Network. There are different chat rooms, so if you’re someone who was newly diagnosed, you can go to an area where people who are newly diagnosed are chatting. Or if you have a specific question, you can ask. It’s new, but we’re really hearing responses that the community is grateful to have it. They’ve made friends there, and they’ve met other people like themselves.
It is our greatest wish to be able to sit with every member of this community, but it’s a huge global community, so that’s not always possible. We try and help everybody in virtual ways, no matter where they are, have a Fox experience and to feel the hug that we would love to give them if we were there in person.
Since the Foundation began, the Parkinson’s research field has completely transformed. When we started, the drug Levodopa was the gold standard. It was developed over 50 years ago and it remains a a primary therapy for replacing the dopamine that is missing. Now there are more options and approaches for addressing previously unmet needs of people with PD. Many new therapies have come to market in recent years. At the time we began if someone asked if there was a genetic component to Parkinson’s, the answer might be no. Now we say it’s a combination of environmental factors and genetic risk factors that come together. We’ve learned so much about the disease from studying the genetics of Parkinson’s, and what processes are involved in the underlying biology. The study of the genetics of PD is helping to teach us what Parkinson’s disease is.
We also know more about processes involved in PD and potential approaches for treating them. There is a protein called Alpha Synuclein that has a function in the body and is supposed to break back down when it’s done being used. Instead, in Parkinson’s it becomes a clumpy, sticky protein that hangs out inside the cell that’s trying to make dopamine. It has toxic byproducts that contribute to dopamine neurons struggling. We have 14 therapies in clinical trials to address breaking down those clumps.
We understand so much more about the underlying cellular processes happening, we’re able to treat more now than just replacing the dopamine. There were about 10 treatments for Parkinson’s at our inception and now there are 39. It has felt amazing to watch this progress getting us better treatments and closer to a cure. The progress being made is having real benefits in the lives of people with Parkinson’s. It’s been exhilarating because it’s been such a time of growth!
Even though there is true progress and research is being developed faster it can never be fast enough if your loved one has Parkinson’s. That’s really what drives us, is that people are living with PD and we need to get this solved.
From a public policy perspective we’ve set in motion a National Plan to End Parkinson’s, which would create an advisory council, aa comprehensive team of both legislators and people who work in the Parkinson’s field, trying to address every aspect of living with Parkinson’s Disease, research, care and services.
If you’re in the early stages of Parkinson’s disease, if you could stop Parkinson’s in its tracks right there, that might feel like a cure. As PD progresses, if there are treatments that address your symptoms, that’s good news. And so, we also work on developing symptomatic treatments that address the motor and non-motor symptoms of Parkinson’s disease. The FDA has approved 18 new therapies since 2014 for PD, which feels like good progress. And we’re encouraged that we have never had a healthier, more robust therapeutic development pipeline. There’s so much research and development, at every step of the way, and that’s really exciting, because it just means that more treatments will be approved and come to market, and our understanding of what’s at play with PD is growing.
I wish that I could climb on top of a roof with a giant megaphone and just scream out our excitement for the tangible progress that is being made for Parkinson’s Disease!
The momentum is amazing on every pathway to potential new treatments and cures. We want to eliminate Parkinson’s and transformative changes are being made. I hope that offers hope, and more than that, real change that can improve the day to day for people. We know we aren’t done until we’ve addressed every unmet need of people with PD, and we won’t stop until we do.
It’s important for people to take good care of themselves when they’re living with Parkinson’s Disease. People have meaningful, beautiful, deep, and important lives long before their diagnosis and long after their diagnosis. And I encourage everyone, if you get a Parkinson’s diagnosis, that it doesn’t have to define the rest of your life. To just dive deeply into the things that matter most to you, you can live well with Parkinson’s Disease.
Michael Fox, himself, is such an optimistic guy, it just oozes out of him. And his optimism is well-grounded in action. We are seeing true progress and that’s exciting. Hopefully it helps people breathe a little easier knowing that this kind of work is being done. We are realistic, too. We know that PD is hard and that people with PD and this whole community come together in incredible ways. We want to help lift the challenges of PD. I have enthusiasm, and hope for better treatments and a better life with PD. I’m seeing it happen. I wish everyone could be informed and feel in their bones how much good progress is being made and feel encouraged.
We’re here until Parkinson’s isn’t.
About Faith McGhee
After 17-year-old Faith McGhee graduated early from Oak Ridge High School in 2022, she sought out a new assignment—researching Parkinson’s disease. It was at a 2022 KiMe Fund Volunteer meeting the idea developed. Over the next few months McGhee made time to interview doctors, caregivers and patients, chronicling their stories of the neurological disorder that steals a person’s ability to move, eat and speak. What sparked her curiosity and concern? Faith’s grandfather has suffered from Parkinson’s her whole life. “The word I would use to describe him—it’s just strong,” she said. “He’s persevered through everything and he’s always been there for me and I try to do the same for him now.” Faith intends for these interviews to be a source of information, education and inspiration.