S06 E10: Ripple Effects

True story media.

I was live streaming Patient Day, is what I was doing, which is how I saw what she said.

And you know, I just kind of sat there and I just tried to let it sink in for a minute. But then there was also this lack of like substance to it.
And

I turned to my husband and I said, you know,

I don't really know what I expected, but I'm still disappointed. Like, I didn't really expect much, but I'm still disappointed.
And he was like, well, yeah, like, she couldn't even say their names.

I don't think she owes me anything because she owes Colin. If there's anybody in this entire world that she owes, it's him.
It's Colin.

As we talked about in the last episode, the Guthy Jackson Foundation's public response to the revelations about Lisa McDaniel has been minimal.

And Michelle's attempt to reach out to Victoria back in May and speak to her directly was politely rebuffed.

We followed up with Victoria to ask about their next steps and how they're addressing this with their patient population. And those questions did not receive a response.

But Victoria is continuing to talk publicly about her work, just as she's done for years.

And in light of what's happened, this glowing press coverage, such as being named one of Forbes' top 50 over 50 in July, mere weeks after this story broke, feels a little dissonant because Victoria has built her reputation not just as a rare disease advocate and a business person,

but as a devoted mom on a mission, to use her frequent turn of phrase, and someone who cares deeply about others affected by NMO.

Victoria did an interview about her story recently on Monica Lewinsky's podcast Reclaiming, which included the usual praise for her advocacy. This interview aired on August 5th.

the same day Guthy Jackson made the announcement about Corey Wolfe being promoted to replace Lisa, which included the sole direct mention of Lisa to date that we know of.

It was buried in the the bottom of the announcement where they wrote that Lisa was not authorized to represent Guthy Jackson in any way and had not been with the foundation for some time.

And it's easy to see why all of this doesn't sit right with Michelle.

There are parts of this interview that will probably come across angry, which is something I don't, I don't know, I

haven't had given myself the opportunity to film a whole lot of since I was like a teenager, you know.

But it has, it has, the anger has kind of struck me because you are 100% right, you know, like she, there is a lot she could do for Colin.

And then, you know, to use his imagery, to send, you know, a camera person to our house when I was a teenager and interview us and

use him for their promotional material and then just act like he doesn't exist and just act like he never existed suddenly is just so

tone death is probably not a strong enough word, but it's the closest thing i have to it and then you know on the other hand of that too even if you want to remove like if you want to play devil's advocate and say well of course i'm going to feel that way like this is personal for me this is my brother you know there's no way there's no world in which i could remove my feelings from it right there's just not

when you have a person that claims to care so much about this community and wants to do everything she can like that's her whole messaging to find a cure for nmo then why are you not questioning if this child had nmo and how that has affected your studies how that has affected your community, how that has affected your research, because you have at least one person now who could have potentially seriously negative impacted these numbers.

This is something we've spoken about previously with experts, the unique impact that a perpetrator can have on the research of a rare disease because of the small sample size of the population.

We believe Collins' blood was taken for the Guthy Jacksons biorepository, and Lisa herself, in addition to educating doctors about NMO, contributed to the research.

Just last year, Lisa was one of the authors of a poster presentation, along with several others from Guthy Jackson, including Corey Wolfe, Jacinta Bene, and Dr.

Michael Yeaman, given at the American Academy of Neurology's annual meeting in 2024.

The title of this presentation is Burdens of Neuromyelitis Optica Spectrum Disorder, Real-World Perspectives from Caregivers.

The study was sponsored by GeneTech, a major biotech company that has donated more than $1.2 million to Guthy Jackson over the years.

The fact that Lisa was so embedded in this community presents a pretty far-reaching scope of possible damage.

Because if one perpetrator hid in plain sight in your organization for over a decade, you cannot assume she's the only one.

That's not even digging into like the people my mother brought in, you know, that could also be out here, have perpetrators as moms, you know.

There are so many like layers to this that my mom negatively impacted their strategy, their numbers, you know, how they look at research,

the things that, you know, didn't work for Colin, which has worked for so many others. And so like, how much of that are they taking in? Right.

And again, like you said, I am sure that Victoria took it in good faith. I am sure that she 100% believes that Colin died of NMO.
But then finding out that there's even a possibility that he didn't,

I just feel like should really dismantle things in your organization and you should really look into how this has impacted us.

And if you're really after a cure and you really care about this community, how are you not wanting to find those answers? How I don't understand how you claim to care.

And then you don't go looking for those answers. If you want to remove all the feelings out of it, at the end of the day, you should at least be looking at just the facts.
Look at the facts.

You know, look at... Look at the reality of the situation and how much it's really negatively impacted your organization.

One of the most chilling things about researching these cases over the last several years is the revelation that perpetrators are finding and learning from one another.

And rare autoimmune diseases like NMO, that are not widely understood and may have a constellation of unique symptoms from patient to patient, make perfect targets. As Dr.

Mark Feldman says, Munchausen by proxy is a crime of opportunity. Through her role at Guthy Jackson, Lisa was able to build a public-facing career centered on Colin's story.

And while she's no longer working at the foundation, the impact of her long tenure there will take time to fully assess, let alone undo.

People believe their eyes. That's something that is so central to this topic because we do believe the people that we love when they're telling us something.

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As we try to untangle the complicated morass of Lisa's story, I wanted to take a closer look at how these opportunities are being unintentionally created within the context of rare disease organizations that are so frequently infiltrated by perpetrators.

My name is Becca Ray. My profession right now is a wealth researcher in higher education.
I have a degree in world religions.

I have a degree in theater, and I have a master's of divinity that focuses on asset-based community development, which is a more sustainable way of bringing systemic change to communities.

And I also live with a disability. I was born with cerebral palsy.
And so the intersection of kind of my areas of research and my life experience is kind of what's brought me to this point.

Becca is a listener of the show and when she reached out with some thoughts about the season, I was immediately struck by how helpful her unique perspective was about this story.

Can you explain what a wealth researcher is?

Right. So if you think about a university, for example, there are names on the buildings.
There might be a plaque in the elevator or like named classrooms and that all has to come from somewhere.

And so every university has a fundraising department. And in more recent years, what's happened is those fundraising departments have research departments.

So we are feeding the fundraisers portfolio almost like you would in sales when you're trying to find a targeted population.

We're trying to find that right combination of wealth and affinity. Using mostly publicly available information

with the internet, you'd be surprised when you accept terms and conditions where your information ends up.

But there's a lot of publicly available information like property holdings, or if you're a director of a company or stock holdings.

And like we've been talking about, family foundations as it pertains to this show, right?

And so there are all these kind of publicly available components you can look at to say, you know, does this alumni seem like they would be a good donor?

And from there, we can refer them to frontline fundraisers who get to do the schmoozing part.

I wanted to know what Becca made of all this as someone who works in fundraising and can also look at a place like Guthy Jackson through the lens of someone living with a disability, as are many of the people that Guthy Jackson serves.

Becca had some thoughts on Guthy Jackson's messaging and how it intersects with this case. I know in terms of marketing we talked about this, right? Where

cure seems to be the goal.

And that's where you kind of get into the models of disability, right? So there's like medical models and social models and economic models.

And so the medical model of disability has disability as a deficit, right?

When you have a child with a disability, your doctor may speak to you in terms of what your child may or may not be able to do.

And so that's kind of the traditional perception, and that seems to be sometimes with these medical foundations, and particularly with the Guthy Jackson Foundation, right?

It's a cure rather than making rather than extending life and making it more tolerable, right?

Advocacy campaigns frequently grab attention and emphasize the urgency of a cause by telling life or death stories, focusing on children's suffering and dramatic prognoses.

And while this messaging can motivate donations, it can also unintentionally provide perpetrators with material they can co-opt.

I think that kind of attitude makes it an easy segue for Munchausen perpetrators, because then the choices are

death or a cure. It's kind of this dichotomy instead of saying, how do we extend life and extend quality of life?

Because the Munchausen perpetrator often says, well, if we can't get a cure, then they're going to die.

And those extremes lend themselves to this medical model of disability because that medical model of disability can sometimes initiate this like parental despair. And that is psychologically normal.

most of the time. What's not normal is leveraging that for your own gain.

And when it's used to gain money, right?

I will say among the disability community, you know, there are some people who say if there were a cure, they would take it, and there's some people who say that they would not.

And so sometimes that can be controversial, especially when you're looking at, you know, people who may have acquired a disability versus people who were born with it.

But the main problem with simply focusing on a cure is that existing as you are with a disability

is already perceived as a negative. Looking at it as a deficit instead of a mode of existence.

And that may not change the fact that some disabled people would want a cure and some people wouldn't, but it's the kind of default mindset I think we have as humanity.

People want to try to make that better.

But what would make it better for disabled people is not if disabled people didn't exist, if disability didn't exist, right?

That's where you get into the social model of disability, which says it's not the disability that's disabling. It's society being so ultimately inaccessible.

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Even though NMO largely affects adults, the caretaker narrative is pretty front and center for Guthy Jackson.

Victoria's daughter Allie has spoken about her experience at Foundation events and co-wrote Saving Each Other with her mom, but Victoria is the most frequent public face of the organization.

It's also notable that both members of the patient advocacy team, formerly Lisa and now Corey Wolfe, her former co-director who has taken over her role, count being caretakers of children with NMO as their chief credential for the work.

Corey previously worked as a doula and a massage therapist, and Lisa never had another job that we know of other than selling jewelry for an MLM.

And to be clear, it's not wrong to include caretakers or give them resources, but anyone working with vulnerable patient populations, especially those including children, should be trained on Munchausen by proxy abuse.

Especially if you know you already employed a perpetrator. Both Michelle and I offered to be a resource for Guthy Jackson on Munch Hausen by Proxy, and they didn't take us up on it.

And they declined to answer as to whether or not they were independently providing any training or resources to their community to ensure that this doesn't happen again.

In Lisa's case, a more thorough background check would have prevented her from working there, but in the majority of cases, perpetrators have no criminal record.

Given the lack of a direct response to the patient community about Lisa and some of the issues Becca highlights about their messaging, it really stresses the importance of having diverse voices at the table.

The common saying that originated with the disability rights movement was nothing about us without us, right?

Because our instinct is to, instead of looking at disability as a spectrum, we kind of make some assumptions and think that,

and people do this with other minorities as well, that we need to speak for them, right?

And so this nothing about us without us. Like when I look at the Guthy Jackson Foundation, it, I, you know, I don't want to discount her experience as a caretaker because that is important.

Personal experience is very important. But I think it, it, when you look at the way the organization is structured, it is very much about us without us.

Well, there are people who live with NMO working for Guthy Jackson. They're not present in leadership.

There are still times where I'll go out and people will address my family or whoever I'm with before they address me, you know, and

a lot of people kind of have that experience. And so what you see in disability history is,

especially for people who may be non-verbal or have a different speech pattern, right, that

there's a caretaker narrative as well. So,

yeah, I've done some in-depth study on the cycle of grief and disability because in college I had the chance to take a

Death in American culture seminar where I had the chance to really get deep into this topic, which is that disabled people are considered sociologically already dead.

And what gave me that idea was I grew up in church.

And I know like with we talked about this somewhat the Sophie Hartman case.

I mean, you when you have a disability in the church, and I understand there are a lot of people with a disability who won't go to church because of this, people immediately offer to pray.

I've had people come up to me in public, like in Cracker Barrel, and offer to pray for me.

You know, people offer to pray for you. People, well-intentioned people, tell you, like, well, when you get to heaven, you'll be able to walk, right?

And it's like, we know RFK made a big deal about it, right? What if they can't play football or go to prom or whatever?

And so you have to, you you grieve those expectations.

And so what we see in disability studies is that there's a lot of, to make up for the fact that disabled people were depressed and institutionalized for so many years, we see positive psychology tries to make up for it in caregiver-focused narratives.

And so it becomes, look at how strong

this woman's sister is that she has this disabled sibling and it's made her such a good person. right?

Or you can even see that when people are, you know, take care of their parents that have cancer or someone who is aging, right?

It suddenly reflects not the character of the person going through

the disability, but the character of the people adjacent to them.

And that's why another big proponent, going back to the nothing about us without us, right?

Caring for others, including our family members, is important and often challenging work. It should be much, much more valued than it is.

But this whole thing gets right at the heart of the deeply contradictory notions that we hold about motherhood. We simultaneously dismiss it and put it on a pedestal.

Mothers are often told, this is the most important job you'll ever have, but, you know, it will be unpaid, unrecognized, and please don't expect your actual paying job to care about it.

And while I was talking to Becca, I kept thinking about Chalice, who came forward to speak about her former friend Sophie Hartman last season.

She told us that when Sophie was in focus, she could believe that it had all been one big conspiracy against her. But as soon as the children came into focus, that illusion fell apart.

Caretakers deserve recognition and support, but when they become the entire focus in illness and disability spaces, it can have the effect of erasing the patient.

And it creates a prime opportunity for someone like Lisa. Well, the caregiver narrative, it shifts the focus, right?

And so that the Munchausen perpetrator can shift the focus to make themselves the center of the narrative. And that's, you know, psychologically, we know that's that's part of it, right?

That they want that attention.

And what I've been telling people when I tell them, like, I, you know, when I first got into the podcast, and I was like, I'm kind of in this Munch Hausen by proxy wormhole.

And they were like, oh, that's interesting. And I, what I say is because, like,

I would not,

you know i'm i'm proud of my experience and my survival and my identity right but i would not wish the things that i have to go through because of that on anybody else right especially a child if there is something that can be done so that someone younger than me with cp doesn't have to go through what i went through like that's great and so i it's funny i used to say you know uh if you can't handle having a disabled child you shouldn't have children at all.

But then you hear this podcast and you're like, oh, some people specifically want disabled children, and that's kind of icky.

And I think that comes down to something I've been thinking about a lot lately in relationship to this podcast and with disabled grief is like

who chooses the helpers?

Many disabled adults don't get enough choice in who their helpers are, and children don't get any choice at all, which allows perpetrators to choose only only the helpers they handpick who support their narrative.

Becca has also been struck by the fact that so many perpetrators, including Lisa, who moved the family from Georgia to Alabama after she was reported by the hospital in Savannah, pick up and move across state lines.

I have an existing support system here, and I have existing doctors that I like here. And so if I were to be in a situation where

I

have a care, a doctor that I'm not placed with on my team, right, I can get a second opinion, but I'm not going to up and move anywhere. And, like, as an adult and as someone with CP who

is verbal and not quite as cognitively affected as some, I have more of an ability to advocate for myself. And I still prefer to bring someone with me to doctor's appointments.

And I was talking to my mom on the phone about this actually the other night, just going over

surgery stuff. And she says, you know, I just worry about the kids with CP who don't have anyone, you know, speaking for them.
And not in a pity sense, but because

they are at the mercy of their parent. And so if they have a parent who, you know,

has munchhausen by proxy or is narcissistic in some way, you know, they don't have control over who the helpers are. And some people, I mean, especially don't.

If you're on Medicaid, like sometimes you don't even get to choose your personal care assistant who is coming in and bathing you and dressing you every day.

And so that's just something that's been on my mind a lot as I've prepared to come on the show is we don't get to choose who the helpers are.

For people like Lisa, they were able to curate who the helpers were.

and they were able to curate helpers who affirmed their narrative of this is something really bad and we think it's going to be fatal.

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My close look at Guthy Jackson has led me to really reflect on the nonprofit that I founded several years ago, Munchausen Support, which B.

Yorker is the current president of and which I still sit on the board of. Now, we don't have $80 million of funding or $10 million of funding.

We pretty much operate on a shoestring budget with nearly everyone involved volunteering their time. But we grew unexpectedly fast.

And while it's been wonderful to see how many people care, it's also given me an appreciation for how complicated this all is.

Even when everyone has really good intentions, you don't always get things right.

I asked Becca from her perspective in both the nonprofit and disability spaces what she thought would make good next steps for Guthy Jackson or any similar organization who finds themselves in such a horrible situation.

I think something that nonprofits have done before is we're going to bring in a consultant, right? And that can,

of course, that costs a fee, right? But that tends to be

the go-to solution with any non-profit that ends up with a situation like this is we're bringing in an external consultant to

investigate.

A good example, well, some people might say it's not a good example, but an example that I can think of off the top of my head is a nonprofit called the Preemptive Love Coalition, or that's what they were called before, and I'm blanking on what their new name is.

But there had been reports of kind of emotional and spiritual abuse

within that foundation.

And external,

and as that was found out, you know, external consultants were brought in, and they've had to restructure and rename the entire non-profit in response to that and it's going to be a big blow to donations and to your for lack of better term street cred in whatever community that you're in but

to be welcome to objective feedback instead of sort of just like gap filling with people who will go along with your narrative already. I think it's

it's it's it's worth at least getting your board together if you haven't done that already, right?

And then I think

what we talked about with the Cerebral Palsy Foundation,

you know, this is, again, my point of reference from my personal experience, but their board is a mix of, you know, clinical practitioners,

business people, and people with lived experience with cerebral palsy. And so, like, making sure that you are...

getting all sides of the story that it hasn't become an about us without us situation. What's interesting about

the Guthy Jackson Foundation is,

like you said, the purpose of these foundations and funds is typically just to funnel money to that cause, right?

Usually, the people who have started the foundation, wherever that seed funding came from, part of the reason that wealthy people designate these funds is that they want to control like what causes it goes to but they they don't have time to be act to have their fingers in the pie.

As Becca alludes to here, Guthy Jackson is an interesting hybrid in terms of structure.

Bill and Victoria donated a huge amount of money to seed the research, and Victoria talks about using that leverage to get researchers to collaborate with each other.

But Victoria also presents herself as being extremely hands-on, writing in one of her books, quote, we needed to find answers at the speed of life.

I had to teach myself the basics of molecular immunology. And when it comes to recruiting people for their biorepository, Victoria talks about frequently making the ask herself.

In her recent interview with Monica Lewinsky, she talks about offering makeup products to women in exchange for these donations, saying, I'll give you a blush for your blood.

Guthy Jackson does have a team member, Kim Jackson Matthews, on their advocacy team who lives with NMO, but the leadership of the organization is Bill and Victoria, who are the trustees of the private foundation, as well as the only two board members for the public nonprofit, the Guthy Jackson Research Foundation.

The public-facing organization originally included a third board member, but that person no longer serves.

And though Bill and Victoria provided a large amount of the initial funding for all of the research, the plan was always to fundraise beyond that, which is why they established the public nonprofit.

And as Victoria talks about at length, for fundraising, you need marketing.

In her book, The Power of Rare, Victoria writes about the need to pull some heartstrings if you're going to get donations, writing, I knew the power of empathy would be significant when it came to outreach for new and bigger funding sources.

And there's nothing more effective at pulling on people's heartstrings than a sick child.

The thing about

raising money for various medical conditions is it's cute when it's a kid, right? It's cute when it's a kid and people want to give more money to help the children.

But when you become an adult, it's not so cute. It's harder to get donations for those kinds of things.

Like the Cerebral Palsy Foundation has a campaign going on right now that's called Cerebral Palsy Grows Up.

Because cerebral palsy has been characterized as this childhood illness, but the truth is that we've become adults and we still need health care.

It's just that we don't look as cute as the kids in the Shriners Hospital commercials anymore. Lisa leveraged her ties to Victoria and Guthy Jackson to paint herself as a heroic advocate.

But the foundation nonetheless benefited from Colin's story, even if they did so entirely in good faith, believing that they were genuinely sharing the plight of a sick child.

But having an abuser so linked to your organization this deeply and for this long is a lot to undo.

That's another aspect of this is like it takes a lot of work and sometimes money to revamp after something like this happens and to recover PR-wise.

They can't do that without accepting help from perhaps some outside entities or or other

people

who have heard of this and who are taking it seriously.

Reading Victoria's books about her experiences with Allie's illness and the foundation, I was struck by some of the parallels in our two journeys.

Both of our lives were shoved off course by a traumatic event in our families, one that inspired our work going forward.

And I too have tried to use my relative privilege to move the cause I've become devoted to forward. And I too may not have always gotten it right.

Victoria writes movingly about the isolation of dealing with something that people perceive of as too rare to ever personally affect them.

She writes, I've been disappointed by how people can shrug off the plight of a person stigmatized by the label of a rare or orphan disease.

Though Munchhausen by proxy abuse is likely not as rare as most people think, it's frequently described that way, which adds to the perception that it doesn't need to be studied, prepared for, or protected against.

It's part of the reason that someone like Dr. Jane Ness, an experienced pediatric neurologist, could miss all those red flags waving in her face.

Despite working in one of the subspecialties most commonly targeted by perpetrators like Lisa, she never saw her coming.

Because NMO is rare and the patient population is small, the involvement of someone as wealthy and well-connected as Victoria has had an outsized impact, and accelerating the research and treatment is something she deserves credit for.

I don't presume to know what's in Victoria's heart. I can only go off of what she and other sources have told me about what's happening behind the scenes at Guthy Jackson.

And I understand that Victoria may be afraid that this story will undermine the progress they've made around NMO, something she expressed to me in one of our email exchanges.

It's really made me think as I've unpacked this piece of the story these last few months, what do we owe each other? What is our responsibility to one another?

Legally, Victoria doesn't have any responsibility to this family. But morally, I think she does.

I'm not negating the good Victoria has done for this community on the whole, but I think what matters is what we do with power, who we are when we're tested.

Victoria is a victim of Lisa McDaniel, but Lisa's other victims don't have the power and influence she does. Their voices are far less likely to be heard, and Colin's voice will never be heard.

He has only Michelle and Sabrina to speak for him. And they're also speaking up for the two two vulnerable grandchildren Lisa is currently living with.

Getting eyes and ears on this situation is all they have to protect them.

So I can understand why it's pretty upsetting for them to see that Victoria appears to be shifting focus away from Colin's story and putting it back on all of the good work she's done.

And of course, all the money she spent. And it's hard for Michelle not to think about how this could have played out differently.

I think if anybody could truly get some movement on that, you know, and we've had people, I mean, I've had strangers email the Birmingham Police Department and I have had strangers in my inboxes telling me how sorry they are and they're willing to help.

And there's a whole community that we haven't even touched of people that she impacted negatively and took money from. And, you know, I just, if anybody can make any sort of movement.

on getting the absolute truth out there and answering so many questions, it's Victoria, you know, and if she, even, even if she says, you know, even if there are people out there who are like, well, that's not really her role, that's not her place, she's there for NMO, that's fine.

Then do it for the actual NMO patients, you know, do it for the people that you have allowed Lisa to contact for you and through you, right?

Like, but this is not someone who just, you know, pretended their way in. I'm sure that Lisa would never have been hired at Guthy Jackson if they knew what they know now.

But Lisa had a public-facing role in the organization, and they empowered her to teach others, including medical professionals, about NMO. Somebody had made mention of, you know, if I was

a doctor sitting in a room and I knew this, I had been trained by this woman, I would question everything I heard and the organization that sent her. You know, I would have so many questions.

And so I just, you know, I wonder how it's landing. I know how it's landing with some of the actual patients and some of the actual caregivers.

And I just, you know, at the end of the day, it's just endless. The amount of harm that my mother has caused is absolutely

endless and it is heartbreaking. And I just wish the people who had enough power and money to do something about it would.

Like,

she has the opportunity. You know, she has the resources.

If anybody has the resources in any of this, it's her. And then just the lack of response.
It is just very,

it says a lot. The lack of response says a lot.
We can assume that Victoria or someone from her team will listen to this. So

do you have anything that you want to say

to her?

You know, at the end of the day,

if you don't feel like you owe anybody else anything, not your community, not me, not Lisa, you owe Colin something

because you used him. You used his image.
You used the story. You wrote it up on your books.
And I said it earlier.

if you care even an ounce of what you claim to care about that little boy,

you would do something to help find out the truth.

We have much more to say about this case as our reporting continues and people continue to come forward. There are people who want this story to go away, but we won't let that happen, will we?

Nobody Should Believe Me is written and hosted by me, Andrea Dunlop. Our co-executive producer is Mariah Gossett, and our assistant editor is Greta Stromquist.

Fact-checking by Erin Ajayi, music provided by Blue Dot Sessions, and administrative support from Nola Carmouche.

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