MG Illuminate Event and MG United, by Argenx, Shine Light on Rare Disease
The company unveiled the online platform on June 1 during its virtual MG Illuminate event, which included segments on doctor-patient relationships, My MG Sole — an initiative that invites patients to paint their story on a pair of shoes — and an introduction to an upcoming documentary about the disorder.
MG United is an online platform that includes articles addressing the needs of people with myasthenia gravis, stories about the MG community, and eventual access to the documentary. People may join the platform, but registration is not required to access the page.
“We’ve come so far and everything that we’ve experienced in the past contributes to what we already have and what we’ve built from,” Rachel Higgins, an MG community supporter who became symptomatic 12 years ago when she moved to Austin, Texas, told Myasthenia Gravis News by phone. “[MG United is] new, it’s tangible, it’s savvy, it speaks to a broad audience.”
The idea for MG United came about six months ago, following an extended and worldwide listening session by Argenx leadership, said Keith Woods, the company’s chief operating officer.
“One of the core values at Argenx is collaboration, and collaboration comes from listening,” Woods said in a phone interview before the event. “This is just an example of how we demonstrate that core value.”
Argenx recently released top-line data from a Phase 3 trial, called ADAPT (NCT03669588), showing that treatment with efgartigimod safely and effectively eases symptoms in people with generalized MG. The therapy targets the FcRn receptor to lower blood levels of immunoglobulin G (IgG) autoantibodies, and improve nerve-muscle cell communication.
After opening remarks by Glenda Thomas, chairperson of the New England Myasthenia Gravis Foundation of America (MGFA) Walk, Katrina Sergeev Gary, director of patient marketing at Argenx, interviewed a patient whose story is featured on the MG United website.
The interview with Leah Gaitan-Diaz focused on her positive outlook on life.
“I try to stay positive and it’s a choice. It’s OK to get a little sad,” Gaitan-Diaz said. “But you don’t have to stay in that mindset and can choose to look on the bright side. Even on a bad MG day, there are so many good things.”
Over the course of the virtual event, viewers could enter one word describing MG as many times as they wanted. Those words were then processed into a word cloud in real-time, and shown on a side panel for all to see.
MG Illuminate reached 282 peak concurrent viewers, and nearly 2,000 total views.
Higgins was next joined by Ericka Greene, MD, director of the neuromuscular clinic at Houston Methodist Stanley H. Appel Department of Neurology, to talk about the doctor-patient relationship.
Higgins advised viewers to log as much data as possible about their thoughts and feelings, as well as measurable outcomes, so as not to forget them during doctor visits. Greene added that patients should be comfortable talking with their doctors about expectations of care, and if they aren’t, they should find someone who can be that supportive voice.
Following the discussion, the audience had a chance to ask some questions. One, directed at Greene, concerned how children with MG should handle their care. While the disease commonly affects adults, symptoms can occur at any age. Greene said it’s important for them to communicate their needs, and learn about their disease.
“That will turn them into an empowered patient, which will turn them into an empowered adult,” Greene said.
Ben Strang, the director of the upcoming documentary, then talked of its goals: building disease awareness, bringing patient stories to light, and telling the truth.
“If we create a face and emotion, we can create a lot more empathy,” Strang said.
While the documentary focuses on three separate standalone stories, Strang and the producers interviewed more than 100 caregivers and patients with MG. People profiled range from a personal trainer to a fire chief to the owner of a performing arts center.
This event was also a chance for Argenx to promote its latest awareness month social media offer, My MG Sole, and its self-defining shoe paintings. Argenx commissioned one artist to design a shoe that incorporated the word cloud, matched with the teal theme of MG.
“Emotions came up when painting this and the journey with MG, and it was a really helpful and great experience,” said Alicia Angel, an MG patient who participated in the project.
Angel’s own creations included a painted pair of boots, one representing the colorful life she had before MG, and the other the “caged” life she’s had after her diagnosis.
The grand finale of MG Illuminate showed the Santa Monica Pier and Boston’s Zakim Bridge lit up in teal, the color for MG. Other landmarks will be lit later in the month, including the Madden Building in Detroit, the Lowry Avenue Bridge in Minneapolis, and the Centennial Olympic Park in Atlanta.
“The attention that it garners will feed into greater awareness, patients will be more attuned to their disease, it might motivate other health care professionals to get involved in education and promoting awareness and that translates into better outcomes at the end of the day,” Greene said at the event.