Genetic Research Offers Hope to Family With 6 Siblings Diagnosed With Schizophrenia

“They looked to the researchers at the time, the genetic researchers, as the folks that were going to have the answers in the long run,” says Lindsay Galvin Rauch about her parents whose 6 sons were diagnosed with schizophrenia. In part 3 of this 6-part video series, Galvin Rauch explains the impact research had on her family’s journey, raises awareness of Robert Freedman’s, MD, research with choline, and discusses the overall opinion the public has on people living with schizophrenia.

Throughout the series, Psych Congress  Steering Committee Member and CEO of Orbit Health Telepsychiatry, Encino, California, Edward Kaftarian, MD, interviews Galvin Rauch about her journey from victim, to advocate, to champion.

Galvin Rauch and author Robert Kolker  were one of this year's featured sessions at  Psych Congress in San Antonio, Texas. Their session "Hidden Valley Road: A Story of Family, Trauma, and Hope" walked attendees through the writing of the critically acclaimed novel “Hidden Valley Road: Inside the Mind of an American Family” that centered around Galvin Rauch's family and their contribution to critical scientific discoveries in schizophrenia. 

Catch up on the series:

Part 1: Family Impacts Awareness and Research of Schizophrenia While Living With the Condition at Home

Part 2: Sibling of Brothers With Schizophrenia Finds Hope Through Therapy and Connectednes

Read the transcript:

Dr Kaftarian:  It sounds like there was a learning curve that happened within your family, and everybody had a different curve. Some have learned quickly. Others have taken their time. It's how we are with society's treatment of mental illness. I would include Psych Congress, myself, and my colleagues as learning quickly because that's our job.

We've learned that these people are precious, and they are worthy of saving. We can even be so arrogant as to say saving because we don't really know how to save them.

We at least appreciate that this is not a condition that's caused by a mother or a father. It's just the condition of humanity and the stigma around it. It's something that I guess everybody has a different level of tolerance for.

We have no tolerance in Psych Congress for stigma. We want answers. We want solutions. It sounds like your family went through that process of trying to figure out what that mental illness means. Is that fair?

Galvin Rauch:  Yeah. They wanted to get to the root of it. That's why they went down the genetic research track. That was the place where my parents found the most answers and hope. They looked to the researchers at the time, the genetic researchers, as the folks that were going to have the answers in the long run.

Although they knew they couldn't change anything about their own children, they hoped that by becoming a part of that research, they would help with the answers for future generations.

I think that's what we're seeing now, is that DNA is going to lead to the necessary breakthroughs. I look at Bob Freedman's work with choline. That to me is one of the most hopeful things in research right now. Using choline in utero to prevent the brain from not developing fully is really, really phenomenal research.

Dr Kaftarian:  How's that research coming along? Is it showing promising results?

Galvin Rauch:  Absolutely, it is. Absolutely.

Dr. Kaftarian:  That's incredible.

Galvin Rauch:  Really exciting. Dr Freedman won't live to see it because he's in his 80’s. The people that are picking it up behind him in his lab, will get to see the fruition. We just want to get that message out to obstetricians that this is really important.

It's not the 50 milligrams that needs to be taken in utero. It's 800 to 1000 milligrams of choline, which is not harmful at all. It's an amino acid. It helps with brain development and probably is preventative for not just schizophrenia, and other major mental illnesses, but also ADHD, Alzheimer, autism, the whole spectrum.

Dr Kaftarian:  Wouldn't it be interesting if a very simple treatment was the solution to an incredibly complicated problem and a serious problem, a problem that we've been researching for decades, and here comes your family, and you're the ones that, hopefully, one day will have proven to have shifted everything toward a solution.

Galvin Rauch:  I certainly hope so. Amgen has taken up research as well with Dr DeLisi's work, who's a Harvard researcher, a genetic researcher. They have all these diseases where the genetic origins were discovered during...What was that called? It was...

Dr Kaftarian:  A renaissance or something like that?

Lindsay:  Yeah, it was like, I want to say it was in 2001, where all the researchers around the world shared DNA, and they were able to find...

[crosstalk]

Dr. Kaftarian:  Oh, human genome, I heard that.

Galvin Rauch:  Yeah. Thank you. That's what I was trying to think up, human gene. There was hope at that point that they would find the smoking gun for schizophrenia, but they didn't. But as Dr Freedman says, they did narrow it down to 150 variants, so we're making progress. Amgen has just given DeLisi and her group a big chunk of money to keep pursuing it.

Dr. Kaftarian:  There is a lot of hope. Your story is all about hope, and hope in a number of areas. Hope that we can treat patients and their families better than we have. Hope that we can provide more access to resources. Hope that those resources will be more efficacious.

Some progress has been made, and I think that there's always hope. With all sorts of conditions that seemed hopeless, remember HIV seemed hopeless because the virus mutates. It's like whatever you throw at it, it's going to change and overcome it.

With Parkinson's disease, it seemed pretty hopeless in the early years. Now, they have some good treatments for Parkinson's disease, better understanding, and so, with schizophrenia, there's hope. Sounds like you're all about hope.

Galvin Rauch:  What else is there? What's the alternative? Hopelessness, that doesn't get you anywhere.

Dr Kaftarian:  Like giving up?

Galvin Rauch:  Yeah. I think that's what I see our society has done as a whole. We've really lost our moral bearings the way we treat people with brain disorder is criminal.

Dr Kaftarian:  Specifically, schizophrenia, or are you saying all brain diseases?

Galvin Rauch:  Specifically, schizophrenia. The autism community has done a remarkable job of teaching the public about autism, and parents not being afraid when their kid's having a temper tantrum in a grocery store to let the clerk know that they're autistic. That brings a level of public understanding to it.

If we can help the public understand that they didn't bring this on themselves. They are not responsible for their brain condition. Their brain condition prevents them from getting the very help they need, so if we can help society quit looking down upon them.

We have to pass them on our city streets every day. The majority of the general public turn a blind eye, and think, "What's wrong with them? Why don't they get the help they need?" We're housing them on our streets, in our prisons, and the cost to society both financially and morally is astronomical.

Dr Kaftarian:  We've become so judgmental as a society, right?

Galvin Rauch:  Yes.

Dr Kaftarian:  Everyone thinks they know everything. Everybody's an expert. You are an expert, because you've been through it. You understand it as much as anyone can understand the impact and the effect that this mental illness can have. You've had to deal with it your whole life.

There's hope that with a greater understanding, people can see that the victim shouldn't be blamed. In fact, we need to help victims of...I hate using the word victim.

Galvin Rauch:  It's an accurate term.

Dr Kaftarian:  People who have suffered, and suffer from schizophrenia or a family member, such as you, who have to deal with the ordeal. Do you think we're moving in the right direction?
With a greater sensitivity toward equity, and toward underserved, and marginalized classes in society now, there's getting more attention to people who have been wronged and who are discriminated against.

Lindsay Mary Galvin Rauch, is the youngest of twelve siblings, six of whom were diagnosed with schizophrenia—becoming one of the first families to be studied by the National Institute of Mental Health and the subject matter of Oprah's Book Club Selection, “Hidden Valley Road - Inside the Mind of an American Family” by Robert Kolker. Her journey inspired her to evolve from victim, to survivor, to advocate. She is also an accomplished co-owner of a meeting and event company for nearly 30 years, where she partners with industry-leading organizations, hospitals, doctors, and other keynote experts to produce impactful functions designed to engage and educate the public.

Edward Kaftarian, MD is a nationally recognized psychiatrist and leader in the field of telepsychiatry and healthcare technology. Trained at the Johns Hopkins Hospital, he is board-certified in Psychiatry, Forensic Psychiatry and Addiction Medicine. Dr Kaftarian has served in a variety of executive roles within the California prison system, including chief psychiatrist, senior psychiatrist, medical director, and director of pharmacy. He is the founder of California’s Statewide Prison Telepsychiatry Program, which is the largest correctional telepsychiatry program in the world. Dr Kaftarian is currently the Chairman and CEO of Orbit Health Telepsychiatry, a company that provides telepsychiatry services to jails and prisons.