Giving Thanks: Acknowledging the Small but Mighty Work of The MOG Project

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/.

Responding to Golden (State) opportunities

I was recScreen Shot 2016-07-20 at 2.16.36 PMently reminded that publicity is perhaps one of the most important tools for a non-profit organization. Athletes C.A.R.E., a student athlete organization focused on ending homelessness and hunger, received an unexpected shout out from Nick Young of the L.A. Lakers on a recent episode of Cupcake Wars: Celebrities.

This was an unplanned windfall for Athletes C.A.R.E., but absent a plan to respond and capitalize on the event, it would have ended as a one-time happening missed by many.

Fortunately, Athletes C.A.R.E. took advantage of its active social media presence. For non-profits, leveraging social media can mean a huge boost in messaging attention, and even fundraising.

The first step is to post about the event. Take to every platform where you have an active presence and let followers know your organization has been publicly recognized. In those posts, be sure to tag the relevant names and organizations. For Athletes C.A.R.E., this meant tagging Nick Young, the L.A Lakers, The Food Network and Cupcake Wars. By tagging the appropriate parties (and their social media accounts) you widen the reach of your post and expose your organization to broader audiences. Now not only will your followers see the post, but the followers of anyone you tag will see the post as well.

Additionally, you can reach out to your local newspaper and other local media outlets to alert them of events such as having Nick Young reference your non-profit on national television. Something at that level might warrant a local news story.

Finally, you can follow-up two or three more times via social media over the course of the following week, pointing out different aspects of the initial event to extend the message and the reach. However posting more than that will likely be unwelcome. And any additional social posts about the event should be broken up by other content on social media.

With limited budgets and personnel, publicity and social media are two of the strongest tools in a non-profit’s arsenal. The ability to capitalize on and expand your organization through opportunities such as the situation with Athletes C.A.R.E. will strengthen your organization and help spread your message.

This post is courtesy of Cassidy Taylor, Lafayette College class of 2017, Kimball’s summer 2016 intern.