By Eileen Coyne, Director of Public Relations, Kimball Hughes Public Relations
During this season of Thanksgiving, we want to take time to recognize a special organization for the tremendous good they are doing and for the hope they are inspiring in at least one small part of the rare disease community.
The MOG Project is a young nonprofit working to promote awareness of a rare neuroinflammatory autoimmune disease found in people of all ages and children in particular. Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOG-AD) is a newer disease only recently identified via an antibody test in 2017. The disease causes dangerous inflammation in the brain, spinal cord and optic nerve. Due to its similarities with Multiple Sclerosis, it is often misdiagnosed as MS, which The MOG Project is fighting to change. Such a misdiagnosis can lead to incorrect treatments and prove harmful to the patient.
For us at Kimball Hughes Public Relations, we are passionate about donating our time to non-profit organizations, and for me, the MOG Project is personal.
In the Spring of 2020, during the height of the COVID-19 lockdowns, my elementary school-aged son was diagnosed with MOG-AD. Unfortunately, it took weeks of frightening symptoms including tear-inducing headaches, fevers, relentless vomiting, chronic fatigue, severe leg weakness, long hospital stays and the loss of nearly 20 percent of his body weight before the doctors came to a diagnosis. Lesions on his brain and spine found in an MRI led his team of physicians to ultimately test for MOG-AD. He was positive. And, as I understand it, we were lucky. My son was a patient at the Children’s Hospital of Philadelphia (CHOP), a leading pediatric institution recognized around the world for its research, treatment and care.
Again, we are fortunate to be a patient at CHOP where my son’s MOG-AD has been well managed. I am convinced that many hospitals around the country would not have known to test for this rare disease and may have even misdiagnosed him. He had two MOG-AD flares early on that manifested themselves by blurring and darkening his vision, but since receiving regular therapy, he has been healthy and well with 20/20 vision – attending school, playing sports and having fun with his friends.
A diagnosis of a rare disease, like MOG-AD, is more than just frightening. It can feel isolating at times. While I had the support of my family, friends and incredible colleagues at Kimball Hughes PR, I needed more. When I was ready to seek additional guidance and support, I came across The MOG Project. Little information was available online about MOG-AD, but The MOG Project was there to show me and my family we weren’t alone. Other patients, doctors and researchers are working diligently to encourage research, enhance treatments, and in due course, finding a cure. I immediately connected with the founder of The MOG Project Julia Lefelar and soon after Kimball Hughes PR began providing public relations services on a pro bono basis.
As public relations professionals, we inherently recognize the value in raising the public profiles of our clients. We understand the meaningful impact a smart media placement can have on an any organization – let alone an advocacy group so passionately dedicated to advancing awareness, educating the medical community, supporting patients and caregivers, and promoting research around a rare disease.
We hope to help this amazing group of remarkable individuals and industry-leading researchers bring MOG-AD to the forefront. Working with The MOG Project, the patients it supports and the influential doctors on its board, we’ve learned that in fighting for better outcomes for patients with one rare disease, we can help promote better outcomes for all. Please check out The MOG Project at https://mogproject.org/.