Allison Feldman - Chief Executive Officer

A Conversation with a Five Star Executive

The Tolan Group (TTG) had the privilege of placing Allison Feldman as Chief Executive Officer of the Lewy Body Dementia Association (LBDA), the nation's leading nonprofit organization dedicated exclusively to advancing awareness, support, advocacy, and research for Lewy body dementia. Since joining LBDA, Allison has continued to build on the organization's mission by expanding its impact, increasing awareness of a disease that is often misunderstood and misdiagnosed, and strengthening support for patients, caregivers, healthcare professionals, and researchers.

Recently, Tim Tolan, TTG's Founder and Managing Partner, sat down with Allison to discuss her journey into nonprofit leadership, the growing need for greater awareness and earlier diagnosis of Lewy body dementia, the challenges facing patients and caregivers, and the progress being made in research that offers hope for the future. This interview has been condensed for clarity and space.

ABOUT ALLISON

Allison Feldman is the Chief Executive Officer of the Lewy Body Dementia Association (LBDA), where she leads the organization's strategic vision to advance awareness, education, support services, advocacy, and research for individuals and families affected by Lewy body dementia. She brings nearly two decades of nonprofit executive leadership experience, having previously served as CEO of both the Facial Pain Association and the Acoustic Neuroma Association.

Throughout her career, Allison has built a reputation for strengthening mission-driven organizations through strategic planning, fundraising, governance, program development, communications, and stakeholder engagement. Under her leadership, LBDA continues to expand its national impact by increasing awareness of Lewy body dementia, improving access to support resources, and fostering scientific collaboration to accelerate research and earlier diagnosis.

Allison holds a Master of Public Administration from the University of Georgia. Based in the Atlanta area, she is passionate about advancing nonprofit leadership and ensuring that every family affected by Lewy body dementia has access to the education, support, and resources they need throughout their journey.

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TOLAN: Before we talk about Lewy body dementia, I'd love to learn a little about you. What in your personal or professional journey led you to become CEO of this organization?

FELDMAN: I had never worked in the nonprofit sector until around 2005, when I needed a job that offered health insurance for my family. My husband was working in sales and didn't have benefits, and a friend knew someone who was hiring. I started out as the receptionist. I didn't know anything about nonprofits. I had been a teacher and worked a variety of part-time jobs while my children were young, so I was essentially a stay-at-home mom with a lot of part-time jobs here and there. I really didn't know anything from anything.

I remember asking, "How are we making money?" As I learned more, I moved into a second nonprofit role, and at some point, I realized how much I loved working in nonprofits. I also realized that a lot of people in senior leadership roles hadn't come from the nonprofit sector, and I didn't really understand that. It's become sort of a thing of mine. Every chance I get, I talk about the fact that you don't just wake up one morning and think, "I think I could be a dentist. I like people. It'd be nice to work in an office. My teeth are clean. I'm going to be a dentist." Yet we see that happen so much in the nonprofit world.

Someone has been successful in marketing or another business discipline, and then they're made CEO or executive director of a nonprofit. I feel very strongly that that's a disservice to the nonprofit sector. Historically, nonprofits have often been viewed as a lesser sector, and traditionally many have been led by women. I think that's one reason they haven't always been taken as seriously. Fortunately, I think that's starting to change.

When I was in my 40s, after my children were older, I earned my Master of Public Administration from the University of Georgia. That education really helped me understand what it means to lead a nonprofit organization, what those responsibilities are, and how they differ from leading a for-profit company or working in the public sector.

That inspired me to pursue nonprofit leadership as a career. I interviewed for the CEO role at the Acoustic Neuroma Association, a very small, rare disease organization. Because it was so small, my team and I did everything. I handled the books, took out the trash, learned the audit process, managed the financials, built collaborations with external partners, developed programs, and wore every hat imaginable. After several years, I moved to another rare disease organization, and eventually your team found me for the Lewy body dementia CEO role.

TOLAN: What was it about Lewy body dementia specifically that made you want to dedicate your leadership and energy to this cause?

FELDMAN: Pretty much everyone has had members of their family impacted by dementia, not Lewy body dementia per se, but dementia writ large, especially in older generations. We didn't really understand dementia and how it impacted not just the person with it, but their entire family and their entire ecosystem. Now we're learning so much. It was very exciting to have the opportunity to take a step up in terms of the size of the organization. What I also learned through the process was the opportunity with the organization, with the science of what's going on with dementia research. I really embraced the opportunity to have an impact at a larger scale.

TOLAN: Lewy body dementia affects more than a million Americans, yet many people still know very little about it. Why do you believe awareness has lagged behind other neurodegenerative diseases?

FELDMAN: I think a lot of it has to do with the progression of the science and how recently Alzheimer's even became a word in our vernacular. If you think back to when you were a kid, people were not talking about Alzheimer's. It's really like when they show the timeline of Earth and where humans fit into it. That's how it is with dementia writ large. I think it's partly just the timeline, but also the progression of the science. We only recently have gotten biomarkers, which are tests that can be done on people who are alive to determine that they have Lewy body dementia. When Robin Williams died in 2014, there was no test in vivo, so it wasn't until the autopsy that they were able to determine he had a very severe case of Lewy body dementia.

I think it's a lot of that, but I also think some of this is stigma. A lot of times people don't want to talk about it. They don't want to share. If they know someone, who has it, even a family member, they don't talk about it. No one feels shame about saying their loved one has cancer or even Parkinson's, but there's still a stigma attached to dementia. I think we are breaking down those barriers, and certainly at LBDA that's what we're trying to do. It helps people feel they're not alone. We always say that we don't want anyone with Lewy body dementia to have to go through it alone. I'm getting emotional because it's so painful to know that a family had to go it alone. We don't want people to feel like that.

TOLAN: For someone hearing about Lewy body dementia for the first time, how would you explain what makes it unique and particularly challenging for patients and families?

FELDMAN: I've got a great team. I hire wonderful people, and I'm the first person to point someone to one of the experts on staff at LBDA. The way I describe it is that you must start by talking about Alzheimer's because that's what most people's perception of dementia is based on memory. My grandmother doesn't know who I am. She can't remember me. She talks about things from 1945, but she can't remember what she had for breakfast. That's what everyone thinks of when they think of dementia.

So, I talk about some of the unique symptoms, like hallucinations. I also talk about REM behavior disorder, loss of smell, and executive functioning as some of the earlier symptoms. I also explain that Parkinson's disease dementia, which is people with Parkinson's developing dementia, is Lewy body dementia as well. We've got this overlap with Alzheimer's and this relationship with Parkinson's, and that is very misunderstood. Some of the organizations on the Parkinson's side don't really address that because they focus on the movement disorder side of things. They don't like to scare people. Again, that's part of the stigma surrounding cognitive issues and dementia.

I also talk about why people want to know. Some people ask, "Why does it matter? Why would I put my loved one through this battery of tests?" We've even had doctors and neurologists say, "What does it matter? He's got cognitive issues. Just deal with the symptoms." But we've found that people want to know what's going on with themselves and their loved ones.

So, I focus on what makes Lewy body dementia unique and what makes the challenges unique, whether I'm talking to someone I bump into, because give me five minutes with anyone in a room and I'm talking about Lewy body dementia, which doesn't make me a lot of friends sometimes. Even when we do advocacy at the federal level, it's important to help lawmakers and their staff understand that this is a unique disorder. We need them to understand that this isn't just another dementia related to Alzheimer's, because that's usually the terminology they use. If they mention a related dementia, it's almost always Alzheimer's. We're working to make sure Lewy body dementia is specifically called out and that there's a broader understanding that there are other related dementias. Some of the related organizations are banding together to figure out how we can move that needle together.

TOLAN: Many patients spend years seeking answers before receiving an accurate diagnosis. Why is Lewy body dementia so difficult to identify, and what needs to change?

FELDMAN: Unfortunately, there's no blood test yet. You may have seen in the news that very recently there have been some blood tests for Alzheimer's that are now approved, and they're starting to be used. In part, it's a history of symptoms. If you're seeing hallucinations, or if someone has REM behavior disorder, that's a very early symptom. If someone has REM behavior disorder, there's a very high likelihood they're going to develop either Parkinson's disease or Lewy body dementia, and more rarely, multiple system atrophy.

We now look at those kinds of histories. If you've got REM behavior disorder, loss of smell, there are certain symptoms we look for, together with a DAT scan, which is a type of brain scan. Now there are two tests that are being used clinically. One is a small skin biopsy test. The other is a cerebrospinal fluid test. In the U.S., there's a lot more hesitation on the part of doctors to even give the cerebrospinal fluid test. In Europe, it's much more common, well known, and widely used. LBDA is funding a study to look at those two biomarkers in different cases, both in people with Lewy body dementia and people with Alzheimer's, because there's so much overlap between Lewy body dementia and Alzheimer's.

TOLAN: Public figures such as Robin Williams and Ted Turner have brought greater attention to Lewy body dementia. How have their stories helped increase awareness and understanding of the disease?

FELDMAN: Ted Turner passed away in late April, and a lot of people didn't know he had Lewy body dementia. We have a wonderful interview that Susan Schneider Williams, Robin Williams' widow, did with Ted Turner.

Robin Williams famously ended his life, which in retrospect is very understandable because he wasn't properly diagnosed. He couldn't understand why he was hallucinating or experiencing depression and other symptoms that didn't match his Parkinson's diagnosis.

TOLAN: Families often describe the caregiving journey as overwhelming and unpredictable. What do caregivers need most, and where do you see the biggest gaps in support?

FELDMAN: That's a great question. They really need all kinds of support at all stages of this journey, and even after they've lost someone. We have support groups and Facebook groups for bereaved family members, loved ones, and caregivers because there's a lot of residual guilt, regret, and pain. They really want to understand everything, and sometimes it's explaining to them that it's okay to bring in a professional. It's okay to know when a loved one may need to be in a different setting because there are professionals who can help. I think there's a lot of guilt around placing somebody in a different setting outside the home, and in some cultures even more so. It feels like a failure if you can't keep someone at home with you or in their own home. It's about helping people know they're not alone. We have support groups, including one that's just for men, and these are for people living with Lewy body dementia.

What I will say is that most organizations have support groups for caregivers. What they really don't have as much are support groups for the people living with the disease. I think people sometimes talk over someone. I had this experience with my mom. She had hurt her ankle, and we were going through the assistive services at the airport. They spoke to me, and she looked at me and said, "Does this guy think I'm an idiot? Why isn't he talking to me?" It's like people think that somebody with a diagnosis of dementia can't speak for themselves or is no longer really a person. That's so painful, and we're taking away so much from them before it needs to happen.

I would say we do so much for caregivers, but we also do so much for the people living with the disease. We talk about intimacy between partners, finances, medical issues, bathroom issues, and so many things that are uncomfortable to discuss. We give people a forum. Like I said, we've got a men's-only group, a women's-only group, one for people of faith, and one for adult children because every caregiving situation is different. It's different if you're a spouse or if you're caring for your mother or your grandmother. We try to support everyone who tells us there's a need in the community.

TOLAN: When you look at the current research and treatment landscape, what developments are giving you the most optimism right now?

FELDMAN: I have a lot of optimism, but I also have a lot of skepticism around advancements because industry, meaning pharmaceutical and biotech companies, is notoriously skittish about investing in neurodegenerative disorders. It's very hit or miss for them. It's not like cancer. They just don't invest anywhere near the same level. Obviously, there are now therapeutics for Alzheimer's, and there are some side effects that are of concern. Because of that, you have a lot of providers that won't even offer them as an option. But I'm starting to hear from friends that their parent is on one of these therapies. They are infusions, and you have to go to the hospital every two weeks. That's a privilege, to be able to go to a hospital every two weeks or to have the time off work to take your loved one every two weeks.

A lot of these therapies are costly, and there are all kinds of challenges that come with them. But that gives me hope for the other dementias. What those therapeutics do is clear the amyloid in the brain, and what they've shown is that they can slow the progression. They don't stop it, and they're not going to reverse the disease. There's also a limit to the impact they'll have. But if you could buy six more months for your mom to interact with your kids, a lot of people would want that. So, I have hope that we'll continue to see progress across the dementia field.

TOLAN: If we were sitting down together five years from now, what breakthrough or advancement would you most hope we're celebrating?

FELDMAN: Yeah, that's such a great question. I really hope there will be therapeutics to improve the quality of life for people with Lewy body dementia. The moonshot is a cure. But I think a realistic hope is that there will be very early testing, like when someone turns 50 and gets a stress test and a calcium score, and then they're put on a regimen of preventive care. That would be fantastic, when we get to the point, and I know we will eventually, where everyone gets tested and things can be done to help prevent us from developing some of these diseases.

Just because you have Lewy bodies in the brain doesn't mean you're going to clinically develop the disease. There are people who live and die with Lewy bodies in the brain. We all have Lewy bodies in the brain. They're just not run amok, misfolded, and replicated. If people are diagnosed early and there are things they can do as preventive measures, or to slow the onset, and then, once they have the disease clinically, there are treatments that really slow the progression, like we've seen with the early therapeutics in Alzheimer's, that would be tremendous. Like anything else, if there's treatment that doesn't have life-threatening or catastrophic side effects, of course that would be a huge step forward.

TOLAN: As our conversation wrapped up, it was clear that Allison's optimism is grounded in both science and compassion. While significant challenges remain, the progress being made in research, diagnosis, and awareness offers real hope for individuals living with Lewy body dementia and the families who support them.

On behalf of The Tolan Group, we thank Allison for sharing her insights and for the important work she and the Lewy Body Dementia Association are doing to advance research, educate healthcare professionals, and ensure that no family faces Lewy body dementia alone.

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About the Lewy Body Dementia Association:

The Lewy Body Dementia Association (LBDA) is the nation's leading nonprofit organization dedicated exclusively to Lewy body dementia (LBD), the second most common form of progressive dementia after Alzheimer's disease. The organization is committed to raising awareness, improving diagnosis, supporting individuals and families throughout their journey, and advancing research that leads to better treatments and, ultimately, a cure.

Through education, support services, advocacy, professional training, and research initiatives, LBDA serves thousands of patients, caregivers, healthcare professionals, and researchers each year. The organization works to ensure that no family faces Lewy body dementia alone while promoting greater understanding of a disease that is frequently misunderstood and misdiagnosed.

About The Tolan Group:

The Tolan Group is a full-service human capital solutions firm recognized for their performance-driven placement services. Our talented recruiting team makes placements for executive leadership and middle management roles in healthcare services, behavioral health, and healthcare tech. We find and place the ideal candidate for our clients in the shortest amount of time possible. 74% of TTG's clients use them time and time again as talent needs arise. We have a 99% completion rate and most of our assignments are completed in 10-12 weeks. We take the time to understand each client’s goals and thanks to our deep industry experience, we know where to find the best candidates to meet and exceed our clients' expectations.