CBJF Works to Increase Education, Awareness, Research
In summer 2014, 22-year-old Connor Judge was working as a landscaper when he experienced unusual pain in his legs and back.
At first, the symptoms were presumed to be related to his landscaping work; visits to a few general practitioners were unremarkable. Then, on Aug. 29, 2014, Connor woke up blind and paralyzed below the waist.
“He was a very healthy, physically fit young man. And then he wasn’t,” Chelsey Judge, PhD, Connor’s older sister, told Neuromyelitis News in an interview.
Connor’s girlfriend drove him to the emergency room, and he soon was diagnosed and treated for neuromyelitis optica spectrum disorder (NMOSD). Connor’s diagnosis was fairly quick; NMOSD was considered as a possible diagnosis even while he was at the emergency room. Nonetheless, the experience was “just traumatic” for Connor and his family, Chelsey Judge said.
“As time went on, [we realized] that we were lucky because he got a quick diagnosis and he got appropriate acute treatment for his relapse,” she said.
At the time, there was little in the way of resources available to help people with NMOSD in Ohio, where the Judges live. This inspired them to form the Connor B. Judge Foundation (CBJF), a nonprofit organization that raises awareness and research funds for NMOSD and other autoimmune diseases.
Chelsey Judge is the scientific adviser for CBJF and serves on the organization’s board of directors, along with Connor’s mother, Pam Judge, who also has official roles as secretary, treasurer, and mom-to-the-rescue.
“Chelsey and I didn’t want any family to go through what we experienced alone with NMO and again, knowing that we were very privileged in getting the diagnosis, etc., and that was why we felt that we had to advocate, start the foundation and just push on,” Pam Judge said.
Connor himself has played an active role in the CBJF, providing a patient perspective and helping with events.
“My mom and I are very much the administrative types, and Connor is our muse, the inspiration, to help us,” Chelsey Judge said.
A chronic condition
Now 28, Connor’s condition has improved and stabilized. He no longer is paralyzed, and his relapses have been less severe, with symptoms that can be managed with appropriate treatment. He has a girlfriend and is an avid dad to his dog, Leo. He also enjoys plants and being outdoors.
“I think, after about five or six years now of NMO, he’s like rediscovering himself,” Chelsey Judge said.
Nonetheless, Chelsey stressed that just because Connor is doing well, he is still living with a chronic disease.
“He will always have this, and it’s always going to be in his life; it’s always going to affect him, so it will always affect his family. That’s never going to change; it is a chronic illness. … I think people can have more grace and understanding for that,” she said.
Because of his illness, there are aspects of life that are forever different for Connor; for example, he has lost sensation in his lower limbs.
“For instance, if he tried to take a bath, he’d have to put his hands in the water to gauge the temperature because he couldn’t put his foot in because he’d burn himself,” Pam Judge said.
Spreading education, awareness
The CBJF aims to spread education and awareness about NMOSD and related conditions, as well as to further research and provide support to patients and caregivers.
“Education is power … I think that the more information the whole greater support system has about the disease, it’s really going to best serve the whole community, not just the patients,” Chelsey Judge said.
The CBJF’s efforts include helping to host events, such as the Ohio Rare Disease Day that took place Feb. 23 and an NMOSD Patient Day through Cleveland Clinic Mellen Center on March 11. Both events are virtual due to the ongoing COVID-19 pandemic.
According to Chelsey Judge, who co-hosts the podcast, it covers “anything that touches on NMO. That can be nerdy science stuff about the underlying immunology of NMO, about patient perspective, coping with the difficult feelings of NMO with anxiety, anger, depression, isolation, sexual dysfunction, you name it. … If it affects NMO, we either have covered it in season one, or we will cover it.”
The CBJF also helped to advocate for the formation of the Ohio Rare Disease Advisory Council. The council was recently signed into law and now is being established.
“It’s going to be this collaboration of all key stakeholders, so patient advocates, researchers, policymakers, things like that, that can address unmet research gaps, treatment needs and policy,” Chelsey Judge said.
In terms of policy, Chelsey Judge says the CBJF is advocating for access to affordable healthcare and disability benefits — essentially, making sure that people with rare diseases can have “their basic needs being met.”
Supporting research, fostering collaboration
In terms of research, the CBJF is funding the lab of Paul Tesar, PhD, a researcher at Case Western Reserve University. Tesar’s lab has been investigating medications that already are approved by the U.S. Food and Drug Administration to treat other conditions — ranging from allergies to fungal infections — to determine if these medications may be effective for the treatment of NMOSD or related diseases.
Specifically, Tesar’s research is focused on finding medications that either protect the nervous system from damage, or repair existing damage. As available treatments generally work by blocking the damaging activity of the immune system, rather than directly repairing or preventing damage, this is “the big, big, big, big unmet need” in NMOSD research, Chelsey Judge said.
The CBJF also is supporting the NMO COVID project at the Cleveland Clinic Mellen Center, which is aimed at characterizing outcomes for NMOSD patients who develop COVID-19.
“They’re trying to understand the outcome of COVID-19 in NMO patients, particularly based on their disability status, disease duration, and potentially some of the medications they’re on,” Chelsey Judge said.
Beyond research, the CBJF has been working with other patient organizations — including The Sumaira Fundation for NMO — and with healthcare groups such as the Cleveland Clinic to improve life for people with NMOSD and related conditions.
“We’re so grateful to have wonderful collaborators. … We’ve been able to do much more,” Chelsey Judge said.
The contributions of individuals also have been invaluable in helping CBJF work toward its goals.
“CBJF feels blessed because everybody really wants to help us. All the $10, $20 [donations] that we receive from friends and family has made this little foundation able to do these wonderful things in our community,” Pam Judge said. “And we’re incredibly grateful and amazed that we’ve come this far.”