Siegel Rare Neuroimmune Association (SRNA)

By Gina DeMillo Wagner

The Siegel Rare Neuroimmune Association (SRNA) was founded in 1994 by Sandy Siegel and other families impacted by transverse myelitis after Sandy’s wife Pauline experienced sudden excruciating pain in her low back and was subsequently paralyzed below the waist. Initially, emergency room physicians couldn’t explain Pauline’s symptoms. She was given steroids and then sent to an acute care facility where she learned to use a wheelchair. After a week in the acute care facility, she was diagnosed with transverse myelitis, or inflammation of the spinal cord. The Siegels, like most people, had never heard of the condition and had no idea what the future might hold. There was little information available and little research happening. The Siegels felt isolated and alone in their experience. So, they decided to reach out, find resources, and build a community themselves. They founded the Transverse Myelitis Association, which eventually became SRNA.

Today SRNA is a not-for-profit, international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON) and transverse myelitis (TM).

A Personal Connection

One thing that makes SRNA so special is that its leadership grew out of volunteers and grassroots advocates who have personal connections to rare neuroimmune disorders. Gabrielle (GG) deFiebre, PhD, MPH, is the Director of Research and Programs for SRNA. She connected after she was diagnosed with transverse myelitis. “I wrote to the general email address saying, ‘Hey, I’m willing to volunteer if there’s anything you need help with, because I come from a public health background.’” Even as she adjusted to her own diagnosis, GG understood the importance of SRNA’s community support, outreach, and research. After volunteering, she joined the staff in 2015.

Rebecca Whitney, Associate Director of Programs and Community Support, found SRNA after her son was diagnosed with longitudinally extensive transverse myelitis at four months old. “I found out that the organization had a family camp,” she recalls. “When he was five years old, he was eligible to attend camp.” The experience of attending camp with other patients, medical professionals, and researchers was life-changing, she says. “It was the first time we had really connected with multiple families and kids who had been diagnosed.” Rebecca went on to volunteer for SRNA and became an employee in 2013.

GG and Rebecca, along with the entire staff at SRNA understand firsthand the importance of expanding public awareness, empowering patients and families, and building a collaborative network of clinicians and scientists who want to advance research and treatment options for neuroimmune disorders.

“I have a heart and a passion for the kids and the families and the individuals who are going through these unheard-of disorders and not knowing exactly where to turn,” notes Rebecca. “So much of it can be invisible to people on the outside. It’s important to be able to say, ‘no, this is not just all in your head. Your experience is real.’”

A New Kind of Hope

When it comes to rare disorders, hope can be a tricky concept, notes GG. “I think it’s important to note that when we talk about hope, it doesn’t necessarily mean your life is going to go back to how it was before,” she says. “Hope looks different than you may have expected.”

GG offers her own experience as an example: “I’m often considered the worst-case scenario in terms of recovery… I still use a wheelchair full-time. I am quadriplegic. When I talk with people who are newly diagnosed, I’m honest about how I am now, but I’m also honest about the fact that my life is wonderful… I’ve adapted to using a wheelchair. I live in New York City alone… I didn’t expect this to be a lifelong thing, but it has opened up so much in my life and has changed my perspective so much.”

Rebecca says her son has expressed a similar attitude toward his diagnosis. Now 16, he plays wheelchair basketball and was asked on a sports survey if there was anything he’d change about his circumstances. But he responded saying, “I’m happy with who I am,” Rebecca says. “He’s a typical teenage boy. He’s enjoying his life,” which is what every parent hopes for their child.

The staff at SRNA hear this kind of sentiment regularly from people who have attended family camps and support groups. One young woman told Rebecca that before she found SRNA, at age 12, she felt suicidal. She credits the community, connection, and validation she experienced at family camp with saving her life, Rebecca says. She saw in others a new way of living that gave her tremendous hope.

Community, Connection, and Resources

SRNA has an extensive library of resources through their website, newsletters, blogs, educational events, an “Ask the Expert” podcast series, symposia and workshops, and support networks. In addition, SRNA funds novel pilot research ideas and helps connect patients with ongoing studies and clinical trials.

They also support the post-residency training of clinicians who are committed to careers specializing in rare neuroimmune disorders through fellowships, and they provide grant support to academic centers of excellence. In this way, they hope to expand the network of support and help ensure that patients in all geographies can access the best care for their condition, GG says.