Progressive alliance advances science through patient-powered research

Eye on Innovation

Harnessing the power of patients’ lived experiences and their biospecimen data, a unique relationship between a nonprofit patient advocacy group called The MOG Project, a team of Mayo Clinic neurologists, and the Autoimmune Neurology Laboratory at Mayo Clinic has created a synergetic bridge that’s advancing the science behind a devastating neurological illness.

Myelin oligodendrocyte glycoprotein antibody-associated disease, or MOGAD, is a rare, central nervous system demyelinating disorder that can render an individual blind, paralyzed, or comatose.

“If there is anything I could say about the relationship, it is not one-sided,” says Julia Lefelar, executive director and co-founder of The MOG Project. “I truly believe we would not be able to help patients like we’re helping them without the support, advice, and involvement of Dr. (John) Chen, Dr. (Eoin) Flanagan, Dr. (Sean) Pittock, and Dr. (Cristina) Valencia Sanchez. They are the world authorities on this subject. I don’t think we could do what we do without them.”

For patients affected by MOGAD, accessing the expertise and world-class multi-disciplinary care provided by the Mayo Clinic neurologists and neuro-ophthalmologists who serve on The MOG Project’s medical advisory board can be life-changing.

“I would be lost without Mayo Clinic,” says Jim Broutman, MOGAD patient and chief media officer for The MOG Project. “People have said to me, ‘You are so brave and a hero.’ And I’m not really.  I’m smart because I have Dr. Chen and good doctors who are guiding me. They’re the ones with the education. It’s important to get the best medical help you can and go with it.”

Just as The MOG Project members benefit from their Mayo Clinic medical advisors, the physicians learn from the patients affected by the debilitating illness, which results when the immune system mounts an attack against the MOG protein. This protein is found on the surface of oligodendrocytes, which are a class of brain cells that help make and support the myelin coating of nerve cells.

“I always say that I learn the most about these diseases from the patients telling us their stories when they come into the office,” says Dr. Flanagan, who is currently the primary investigator on National Institutes of Health-funded research on the incidence, prevalence, and outcome prediction of MOGAD patients. “These stories are really helpful to us to better understand what are the issues most front of mind that we need to be looking at. Because if you want to help patients with the disease, you need to know what the symptoms are and what (patients) need from us to be able to go forward.”

An advantageous alliance

For MOGAD patients and their families, advancing what is known about MOG antibody-associated disease cannot happen fast enough. It is a primary goal of The MOG Project, says Julia, who was diagnosed with the disorder in 2017 through Mayo Clinic Laboratories testing after a 17-year journey with symptoms and misdiagnosis. Julia, her sister, and her daughter, along with a handful of like-minded individuals, began laying the groundwork for the organization in 2018 using a Facebook group as the main vehicle to communicate with patients.

“We wanted to bring a bunch of patients together to start a patient-led network so we could help researchers get data,” Julia says. “We wanted patients to know these physicians are here. MOGAD patients are an underserved community. We don’t have any FDA-approved therapies.”

Treatments for the illness exist, but most are prescribed off-label and more difficult for patients to access. Advancing approved medications for the illness is critical to help patients manage and prevent symptoms. Without treatment, many patients are at risk for recurring immune system attacks. These include optic neuritis, which can cause blindness; transverse myelitis, which can cause paralysis; and several types of encephalitis, including acute disseminated encephalomyelitis (ADEM), which causes widespread brain and spinal cord swelling; autoimmune encephalitis; and cerebral cortical encephalitis.

While some treatments have shown promise at managing the illness and there are promising clinical trials currently underway — including two multi-center studies involving a Mayo Clinic trial that evaluates the efficacy, safety, and tolerability of rozanolixizumab and satralizumab as a treatment — the nature of the disease makes it hard to predict and control.  

“As a patient, there are so many things that could be related because of the disease, so you literally second guess yourself continually,” says Jim, who was diagnosed with MOGAD in 2018 through Mayo Clinic Laboratories after experiencing an episode of optic neuritis followed by an episode of transverse myelitis, which are hallmarks of the condition. “I could lose my vision at any moment and it’s a little scary and it’s a little weird.”

Following Jim’s diagnosis, he received an appointment with Dr. Pittock. That appointment and the impression made upon Jim by Dr. Pittock and Dr. Chen, who evaluated him as part of his initial week-long workup, prompted him to start an online, Mayo Clinic-supported fundraising page dedicated to raising money for research.

After his Mayo Clinic visit, Jim took to social media, where he found Julia’s MOGAD support group on Facebook. Jim made some comments on the page about his experience and not long after a member of the group contacted him.

“I got a call and learned that a group of people, one of them Julia, was starting a group called The MOG Project,” Jim says. “They said they really liked what I had to say and asked me to join with them. So I got involved.”

In its infancy, when The MOG Project was looking for medical advisors, Jim quickly volunteered to recruit some experts. His first call was to Mayo Clinic.

Advancing awareness

In 2020, Drs. Chen, Flanagan, and Pittock officially joined The MOG Project as medical advisors. Dr. Valencia Sanchez joined a short time later. In addition to the Mayo Clinic physicians, physicians from Harvard, Stanford, Oxford, and Johns Hopkins universities, among others, sit on The MOG Project’s medical advisory board.

The medical advisors answer medical questions that arise from the group, participate in developing educational content, such as podcasts, to highlight advancements, and participate in collaborative, medical meetings each year, says Dr. Chen, a neuro-ophthalmologist who specializes in treating patients with visual disorders related to neurological causes.

“We’ve also provided contact information and a link to our study coordinator in the Mayo Clinic neuroimmunology lab, so patients can contact us directly to talk about research and potential visits,” Dr. Chen says. “Occasionally Julia will send an email saying a particular patient would be a great patient to be seen at Mayo Clinic.”

Mayo Clinic is an internationally recognized center of excellence for treatment of MOGAD and has cared for many patients, Dr. Chen says. In 2017 Mayo Clinic Laboratories implemented the first evaluation to detect for MOG antibodies in the United States.

Specimens of patients who are tested and treated at Mayo Clinic are collected and stored in Mayo Clinic’s biorepository, which contains the world’s largest archive of patient samples.

“We collect their spinal fluid and that feeds into the research program, where we are looking at a variety of things,” says Dr. Pittock, who is the director of the Neuroimmunology Research Laboratory at Mayo Clinic. “For example, we have a research article at the moment looking at the benefit of testing MOG antibodies in spinal fluid. We wouldn't be able to do any of that research without patients.”

Many MOGAD patients treated at Mayo Clinic submit samples over time. This allows researchers to learn more about the disease course, says Dr. Flanagan. “We can learn from that and use that actionable information to help better the care of patients with MOGAD.”

Accelerating answers

Due to improved diagnosis, the community served by The MOG Project, which currently has 4,500 members, continues to expand. “Every day I get an email from a new patient,” Julia says. With members around the world, the support group has become the main source of information for patients seeking help.

Among the successful initiatives spearheaded by The MOG Project with the support of medical advisors has been the establishment of an International Classification of Diseases (ICD) diagnosis code for MOG. This code classifies MOGAD as a unique disease entity, which details diagnostic criteria, enables improved decision management, and facilitates reimbursement management for affected individuals.

The MOG Project has also helped author several papers, including a recent study highlighting fatigue and symptoms related to quality of life, as a result of its collaboration with its partner medical institutions. More importantly, the relationship helps guide the direction research needs to go.

“There’s definitely some synergy there where working with The MOG Project has helped us come up with ideas for new research and helped us move the field forward,” Dr. Flanagan says. “Most of my research ideas come from my patients. They've sent me many patients and those people have told me their stories. They tell you something, and you combine all your patients together and do research and you figure out an answer relevant to a patient.”

Especially for rare disease communities, like the one served by The MOG Project, direct patient involvement is crucial to rapidly propel research that improves lives.

“The philosophy of our center is, ‘the answer is in the patient,’” Dr. Pittock says. “The patients have the answers and it's groups like The MOG Project that facilitate not only education of patients, but also direct them to where the research is being done, and to the drug trials. It's imperative for rare diseases that these drug trials are successful because if they're not the drug companies will lose interest. It's really important, from my perspective, for The MOG Project to direct and educate patients on where to find these drug trials because, without patient involvement, there is no cure.”

Read about how the collaboration between The MOG Project and Mayo Clinic physicians helped one patient access integrated, leading-edge care for the debilitating neurological condition in this month’s Patient Spotlight feature.

More from Eye on Innovation


Robin Huiras-Carlson

Robin Huiras-Carlson is a senior marketing specialist at Mayo Clinic Laboratories and a Mayo Clinic employee since 2015. Her writing focuses on specialty testing, innovation, and patient-focused initiatives.