ATMRD 2024: Warm, Welcoming Community in Movement Disorders

Imagine being in a room full of medical professionals from across the country—movement disorder specialists, neurologists, fellows, residents, advanced practice providers, and more—all eager to hear from someone with a diagnosis about how their provider can better communicate, earn their trust, and improve their quality of life. For many who have struggled to navigate our broken healthcare system, that may sound like a far-off dream. But that’s exactly what happened during a session brought about by community survey responses on the first day of our annual conference for healthcare providers, ATMRD (Advanced Therapeutics in Movement & Related Disorders™). 

Let’s picture it together. 

Lori DePorter, a longtime PMD Alliance Ambassador, writer for this blog, and, most notably, a person with Parkinson’s, sits on the main ATMRD stage, joined by a variety of perspectives across the Movement Disorder Care & Support Ecosystem©. To her left is her son Adam DePorter, PA, whose lived experience spans family and medical networks, as both a care partner to his mother and a Physician Assistant. To her right, Maria Cristina Ospina, MD and Pam Zeilman, NP round out the medical network and PMD Alliance Chief Program Officer and social worker Anissa Mitchell, LCSW represents the therapy network. 

Below the stage, a crowd of healthcare providers and community advocates scribble notes, snap pictures of impactful slides, and listen attentively to the discussion, as the panelists address ways for a provider to gain a meaningful overview of a patient’s experiences during their limited time together. 

“I think having a self-evaluation tool from a patient,” Lori says, “rather than…velvet, and yes that’s a hippo…” Laughter rings through the room as she continues to reference the Unified Parkinson’s disease rating scale, a common evaluation tool. “…it would be nice to have something for me to give you, maybe like a sliding scale or a checklist.” 

Movement Disorder Specialist Dr. Ospina leans forward in her chair. “What would you put on your checklist?” she asks. 

“I would put that I’m not sleeping… Are your off times there or are they bothering you?” Lori goes on to explain that the tools her doctors use often fail to account for details like the level of disruption of her symptoms or the timing of the appointment. “A lot of them ask questions about last month, but what if I haven’t seen them in a year?”

PMD Alliance Clinical Director Kelly Papesh, MSN, DNP moderates the panel, sharing slides filled with feedback from a survey our community participated in earlier this year about what they aren’t sharing with their doctors and why they aren’t disclosing. The survey necessitated the need for this session at ATMRD, as a concerning 82% of respondents in the movement disorders community shared that they had symptoms they had withheld from their provider. Perhaps unsurprisingly, when asked what they believed would improve communication between the healthcare provider and the patient, the most common answer was more time. 

Arita McCoy, MSN, CRNP raises a hand from the audience, directing her question to Lori. “How much time do you think is sufficient for an office visit?” 

“I try to limit myself to three questions I go in with and won’t leave until I get the answers,” replies Lori, going on to explain that she understands the pressure her physicians are under. 

“Atmosphere is important, too,” adds Adam. “I’ve heard you talk about that before,” he directs to his mother. “It might only be 15 minutes, but it doesn’t feel rushed, and feels like it could go on longer if it needed to.” 

The healthcare providers onstage nod knowingly, and hands in the audience fly up, eager to share their own questions and comments surrounding their experience with office visits. 

The time crunch felt by both doctors and patients is one of the reasons PMD Alliance and MedStar Georgetown University Hospital teamed up three years ago to start ATMRD. Most healthcare providers receive limited training surrounding movement disorders, which often ends with diagnosis, making specialized care a necessity for many people to receive long-term symptom management. 

Compounding this problem is the lack of movement disorder specialists in the U.S., resulting in cramped schedules and large patient loads for the roughly 660 of those in practice attempting to serve 40 million with these conditions. 79% of those surveyed at ATMRD 2024 report that they see 50+ patients weekly, with 16% reporting over 200 per week. As you can imagine, this creates a recipe for burn-out for practicing physicians, limiting their ability to remain connected to and inspired by their national community of peers. Furthermore, time spent on travel for educational opportunities is time they can’t be with their patients, which may be why 71% of our 2024 respondents attend no more than 2 conferences annually. 

ATMRD seeks to be a solution, serving all those treating people with movement disorders, ensuring content and connection that not only meets the needs of experienced movement disorder specialists, but also those of early career physicians, advanced practice providers, general neurologists, treatment manufacturers, and those they treat. ATMRD 2024 exemplified that goal. For four days in late June, stakeholders gathered along the Potomac River hugging the nation’s capital and learned in community—gaining insights, sharing findings, and centering those with a diagnosis and their voices at every opportunity. 

“I would like people with movement disorders to know that ATMRD 2024 is all about them and their caregivers and how we can make their quality of life better,” said Libanos Berhe, NP. 

Many ATMRD sessions included the discussion of social prescribing for people with movement disorders, which is the practice of encouraging those with a diagnosis to seek a support or exercise group or a similar social outlet to keep them engaged and grounded in community. Healthcare providers in movement disorders and their patients share that need for warm, welcoming community, and many professional conferences don’t offer that environment. 

ATMRD 2024 shone in the ways it welcomed providers and advocates to be candid, informal, even silly, and connect through laughter as well as through shared purpose and insights. Robust Q&As were common at the end of sessions, some feeling more like a group discussion, as attendees offered comments from the audience to enhance the conversation or provide a counterpoint. Challenges on the conference mobile app encouraged learners to go on group outings, play “Where’s Waldo?” with the program guide, and create conference memes to share. When serving a community that’s leaning toward burn-out, these opportunities to discard artifice and form meaningful connections are essential to recharging batteries, renewing passion, and forging interdisciplinary relationships that will support their care strategies for years to come. 

We asked attendees to reflect on what they would want the movement disorders community to know about ATMRD 2024. Amanda Guggenmos, FNP-C, PMHNP-BC, an Advanced Practice Provider from Nebraska told us, “This is my first time attending this conference, but it is one that I will be attending annually. If there is one program you attend annually for movement news and therapy updates, it should be this one.” 

From the expert-led continuing medical education sessions, to the exhibit hall featuring treatments from our industry partners and attendee research, to the PMD Alliance table where attendees could chat with movement disorder community members—the most common reaction shared by ATMRD learners was gratitude.  

They were excited to learn about medications and insurance tips that could help current and future patients. They were eager to have the opportunity to receive candid feedback from people with movement disorders about how to improve the patient experience. They took notes, requested slides from CME sessions and resources for their patients, and said “thank you” so many times. Being the only one with the answers can be a heavy burden, but ATMRD shows those providers that, no matter the makeup of their practice, they’re not alone.  

At the end of that magical session on the first day, Anissa Mitchell shared the following: “You don’t have to be all things to your patients. There are other resources out there.” 

PMD Alliance is grateful and proud to be one of those resources, bridging gaps and creating understanding, so no one is an island. We’re all part of the movement disorders community, and we’re in this together.