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NMOtion Blog

Discussing NMO Research and Advocacy

Mother of a son lost to rare autoimmune disease educates tens of thousands of medical professionals.

Getting up to speak to an audience can be a daunting task for anyone.  Public speaking is listed among people’s biggest fears. Taking it to another level, speaking to an audience of highly-educated doctors and nurses can strike fear into the hearts of the most-seasoned speaking veterans.  Yet, that didn’t stop one mother determined to educate medical professionals about a rare autoimmune disease.

Since Lisa started four years ago, she’s educated over 50,000 people.

Losing her son to neuromyelitis optica (NMO), a disease that can cause blindness and/or paralysis, Lisa McDaniel has given countless NMO presentations to audiences all over the country.  In fact, since she started four years ago, she’s educated over 50,000 people including medical professionals, politicians (including a governor), and countless others. She’s spoken at locations that range from small medical clinics to conferences and health fairs, with crowds of hundreds at a time. She’s appeared on media outlets like TV and radio, and is an active voice in the community. But Lisa is not a doctor or a researcher, or even a professional speaker. While she never imagined she would find herself in this role, it’s been instrumental in helping her stay connected to her son, and a key source of motivation to raise NMO awareness. 

Her secret to reaching so many people? “Being willing to put yourself out there,” Lisa says, “and not being afraid to be turned away.” Persistence and patience are key. She hopes her story will inspire others to join her quest and give presentations about NMO to audiences around the world.  

In this article, we sit down with Lisa to hear her story, and to understand how and why she began her role as an advocate for NMO.

 

“I first heard the words, ‘Neuromyelitis Optica’ on March 5, 2008,” Lisa explains. “My then 5-year-old son, Collin, had been sick since the previous November when he lost vision in both eyes. I will never forget that date. It changed our lives forever.”

Collin McDaniel (center) who lost his battle with a rare autoimmune disease called neuromyelitis optica (NMO), poses with his mother, father, sister, and service dog. NMO can be a life-threatening disease that mimics multiple sclerosis.

Collin McDaniel (center) poses with his mother, father, sister, and service dog.

NMO is an autoimmune disease of the central nervous system that affects the optic nerves and spinal cord, which can lead to paralysis and blindness. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord. Most individuals with the syndrome experience clusters of attacks months or years apart, followed by partial recovery during periods of remission.

When Collin lost his vision and began to have trouble walking, Lisa and her family were living in Georgia. Local doctors struggled to understand Collin’s symptoms, and Lisa’s search for understanding took her all the way to the University of Birmingham, Alabama.

Dr. Jayne Ness, one of the few neurologists then who was familiar with this rare disease, was able to diagnose Collin with NMO. Lisa eventually moved her family to Alabama to be closer to Dr. Ness and the Center for Pediatric Onset Demyelinating Disease.

“My job,” says Lisa, “was to learn everything about NMO so I could know how to best help Collin.” Collin’s battle with NMO lasted four years, until he was nine years old. “Collin fought NMO with determination,” his mother says, “until he went to be with the Lord in 2012.”

As for Lisa, her journey with NMO continued as she searched for ways she could honor Collin’s memory and support others in the same situation. “I remember what those first months were like for my family,” she explains. “I want to make sure other families have support and never feel alone on their NMO journey.” It was this drive that led her to become an advocate for NMO.

Building Awareness about NMO

“At that time,” Lisa remembers, “the little information that was available was very scary.” Ask anybody in the NMO community, from doctors and researchers to patients and advocates, what the biggest hurdle for progress is, their answer is likely the same: access to correct information.

After Collin passed away, Lisa started to engage in support groups, online and through countless phone calls. She began to see herself as “a reference point and a contact to help families educate themselves about NMO.” She soon realized that educating just the patients and caregivers was not enough.

“The more I learned about NMO,” she says, “I realized not only was there a lack of information, but also a lack of knowledge in general within the medical community.”

Despite being discovered in 1894 by French neurologist, Eugene Devic, due to its rarity it remained largely in the shadows of the professional community and was believed to be a variant of multiple sclerosis (MS) until only several years ago. Today doctors now recognize NMO as a distinct disease.  A correct understanding and diagnosis of NMO is critical, because some treatments for MS may actually cause more problems in those with NMO.

Lunch ‘n’ Learns

Lisa began to explore ways in which she could help to spread educational awareness of NMO beyond the patient community to the medical practitioners themselves.

“Dr. Ness suggested I try talking to them during their lunch breaks by taking cookies or lunch to the receptionist and nurses,” Lisa says. “I started with Collin’s pediatrician, who agreed to give it a try. When I walked into the room that day she had her entire staff in the room for me.” After her presentation was over, the staff found the information extremely valuable. Her first attempt was a success. She began to collect referrals from doctors and nurses in her audiences, always asking for more opportunities to present at other locations.

When asked why she called them Lunch ‘n’ Learns, Lisa responds that, “most medical professionals are always walking around, never staying too long in one area – except during lunch.  It’s a perfect time to capture their attention.” The strategy has paid off. She describes her reception as warm and opening.

lisa-mcdaniel-lunch-n-learn

Lisa and a group of medical professionals at a Lunch ‘n’ Learn.

While it may sound daunting to stand up and talk to professionals about NMO, the truth is that anyone can do it. “When I signed up to be a volunteer NMO advocate with the foundation,” she explains, “they sent me an ‘NMO Share Package.’ In it were brochures, literature, as well as a CD full of information, including a PowerPoint presentation. It really helped to prepare me.”

Her Lunch ‘n’ Learns have become one way she stays connected to Collin and honors his life. Her NMO story and experience weave a personal connection into her talks and reach audiences on an emotional level, reinforcing the critical need to know about NMO.

“The more of us who are out there advocating, the wider the reach we have! It really is simple, though it may seem overwhelming at first. The hardest part is getting started.”

Click here to learn more about NMO and how you can become an advocate.

Further Resources

Watch Lisa’s Presentation at the 2016 NMO Patient Day

 

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