Ben LeNail and Justine Fedak share their experiences living with brain disease and how they were able to cope and find strength in the face of their diagnoses.
Millions of people and their loved ones will be impacted by a brain disease diagnosis at some point in their lives. That’s why the American Brain Foundation is committed to research across the entire spectrum of brain diseases and disorders. We know curing one disease will lead to curing many.
We also believe in providing support and resources for people living with brain disease. In our recent webinar, we invited two inspiring speakers to share their first-hand experiences of receiving a brain disease diagnosis.
Our panelists included Ben LeNail, a biotech investor, rare disease activist, and vice chair of the board of the American Brain Foundation, and Justine Fedak, a marketing executive and motivational speaker. They shared their stories about living with brain disease and offered hope and advice on coping with a diagnosis.
The Journey to a Diagnosis
About 16 years ago, around age 40, Ben LeNail started experiencing a number of neurologic symptoms for which doctors could find no immediate cause. It took two years and countless tests before he was diagnosed with a rare brain disease caused by a single gene mutation: X-linked adrenoleukodystrophy (ALD).
Justine Fedak was diagnosed with multiple sclerosis (MS) at age 31. She first experienced symptoms during an episode in which she lost feeling in her toes and legs. Within 48 hours, she was completely paralyzed. She underwent a series of tests and was quickly diagnosed with MS.
Justine remembers feeling a mix of fear, disbelief, and helplessness. She had never heard of MS and was told she’d probably never walk again, so the diagnosis was frightening and confusing. “I had to go on quite a journey of learning,” she says. “What did this disease mean for me? And what would it mean long term?”
Ben, on the other hand, felt a combination of relief and terror—relief at finally landing on a diagnosis and terror at the bleak prognosis he found when researching his disease. He soon learned there are different types of ALD and that there are things a person can do to slow the progression of the disease. This gave him hope and the motivation to learn more.
Finding Hope in Knowledge and Community
Because his disease was so rare, Ben started to do his own research and reached out to some of the lead authors of published studies for more information. One researcher based in Paris responded and invited him to an upcoming meet-up of 300 people with ALD. “I found myself surrounded by a sea of wheelchairs and people on feeding tubes and respirators,” he says. “I was absolutely terrified, but I had to mobilize myself to go in and talk to people and make friends… That was kind of the first step in really entering this community.”
It took several years, but Ben found hope in that sense of community and the chance to hear from people with ALD who were thriving in life. He also took comfort in learning about current and ongoing research, including the fact that a number of biotech companies were working on drug discovery, therapeutic programs, and clinical trials.
Two specific interactions eventually sparked hope for Justine. “I had two people give me the opportunity to get back into my own body—even though my body was changing and was different—to empower me to be who I was,” she says.
While she was still in the hospital, Justine’s brother, a cardiac surgery resident, visited her on his hospital rounds. He encouraged her to take control of her situation and learn everything she could about MS. “He sort of put me on notice that it would be my responsibility to be my own advocate,” she says. “And that appealed to me—I could empower myself with knowledge.”
Justine had started to think about going on disability leave, not seeing any possibility of a future in her career, when a senior colleague at her company told her, “Nothing about you has changed, you just feel differently about yourself. You are the exact same person. Your ability to deliver your work product is exactly the same.” These words encouraged her to continue working and to re-find a sense of self in the midst of her diagnosis.
Advocacy as a Way Forward
In the beginning, Justine and Ben had to wrap their minds around their diagnoses, specifically how different their lives were going to look from what they had always expected. Over time and with support from others, Ben and Justine both found themselves eager to learn more about their respective diseases and become advocates for others in their communities.
When Justine regained some of her mobility, her friends invited her to participate in a community walk to raise awareness and support for MS research. After raising about $50,000 for the event, Justine was recognized as a top fundraiser for the National Multiple Sclerosis Society.
“That reminded me that, even if I can’t move around, I still have so many other things I can contribute,” she says. “That shifted my mindset, and that’s when I said, ‘you know what, I’m going to advocate.’”
With his neurologist, Ben started a foundation to research and advocate for ALD. Part of this advocacy included lobbying to have the disease included in the standard newborn screening panel. Now, more than 60% of newborns are screened for the disease, leading to early diagnosis, better monitoring, and improved treatments. He also became a biotech investor, investing in assistive devices and drug discovery companies that help people with brain disease.
Ben also works with young men diagnosed with ALD to help them accept their diagnoses and overcome the significant changes the disease brings to their lives. “[ALD] really takes away a lot of what we would characterize as typical male attributes—strength, vitality—and a lot of young men who are diagnosed become very despondent,” he says. He has become a mentor and source of encouragement for other men with ALD, promoting exercise as a way to stay mobile and active.
Like Ben, Justine believes regular movement is important for keeping physically and mentally strong. Even as her disease limited her mobility and created the need to use a cane at times, she has continued to stay active in any way she can. This helps her remain positive and reminds her not to give up on herself even though she can’t always do things the way she used to. “There are small triumphs, but they’re hugely impactful, and we ourselves need to remember how important those tiny triumphs are,” she says.
Justine also says it can help to focus on the progress researchers are making and ways this progress impacts your daily life. For example, since her diagnosis she has seen an increase in the types of medications that are available to manage her MS. “Research has helped the medical profession, the researchers, and many academic professionals to find different solutions that make the disease much more manageable, so I do think that it’s important to remember that progress is there,” she says.
She and Ben remain hopeful that further research will yield improved treatments, identify more lifestyle changes that can help people living with brain disease, and find cures. “What I’m excited about—and I think the American Brain Foundation is very much part of that—is identifying new talent, new ideas, young investigators who can think out of the box,” says Ben. “I think we’re on the cusp of some amazing breakthroughs for neurological disease.”
Both Justine and Ben hope to play a role in these breakthroughs by supporting research and sharing their stories as a source of strength for others living with brain disease. Receiving a diagnosis allows people to form a treatment plan and learn about symptom management, connect with support networks of other people living with the same disease, find doctors with specialized knowledge, and establish a way forward.
“You tend to lose yourself in the terror of [the diagnosis], but we’re examples of people that have thrived,” says Justine. “That doesn’t mean that there aren’t difficult times, but it means that you remember who you are and more about yourself than the diagnosis.”
The American Brain Foundation is committed to finding cures for all brain diseases. Donate today to make a difference. With your help, we won’t have to imagine a world without brain disease, we’ll be able to live in one.