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About the Board

Why we created the foundation

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Board of Directors

The Board of Directors of The Catatonia Foundation meets at least quarterly to ensure that we are fulfilling our mission responsibly.  

Each member of the Board of Directors is committed to our mission and has taken an active role in fulfilling the goals of The Catatonia Foundation.


The board of directors is comprised of the following individuals:

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Eileen Donovan-Lopez, MD

Eileen is a physician with a specialty in Pediatric Physical Medicine and Rehabilitation. Despite going to medical school, she had never heard of Agitated Catatonia until her autistic son, David, was diagnosed with it at 14 years old. It was a difficult journey for Eileen and her husband, Mike, to find a way to help David whose unprovoked aggression was extreme. He was not allowed to attend his special education program and had been turned away from emergency rooms when seeking out help. David's family was forced to call the police to keep David and themselves safe. They knew it wasn’t his fault and he needed effective treatment, not to be punished. When a doctor suggested that David be sent out of state to live at a facility for individuals with serious behavior problems, Eileen and Mike could not bear the thought. “How can you give your child away?”

 After a long journey to find a good option to help David, he received ECT at the University of Michigan under the care of Dr. Neera Ghaziuddin. ECT has been highly effective in helping David with the severe aggression. Eileen feels lucky that David was able to receive this treatment because there are very few centers that provide ECT for children. 

Eileen brings a unique skillset to The Catatonia Foundation because she understands the issues involved in getting a diagnosis of Catatonia and access to proper treatment from the perspective of a parent and a doctor. Eileen likes to paraphrase Judy Collins—”I've looked at Catatonia from both sides now.” Eileen hopes she can help get the word out about the diagnosis and treatment of Agitated Catatonia through The Catatonia Foundation. She would like to help provide information to both families/patients and physicians so it will be easier to get an accurate diagnosis and the proper treatment. She hopes The Catatonia Foundation can normalize ECT—it's not what was portrayed in One Flew Over the Cuckoo's Nest!




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Amanda Gibbs

Amanda is the Communications Manager for the Knight Cancer Institute at Oregon Health & Science University in Portland, Oregon where she manages a team of communications professionals to share the stories and accomplishments of the institute. She is a public relations and communications leader who above all else tells stories to demonstrate the impact of science on the human condition. She is passionate about building creative and inclusive teams. Amanda’s entire career has been dedicated to the field of communications; she has worked in public relations, media relations, marketing and science communications. She knows the power of strong storytelling and believes the stories of The Catatonia Foundation will help people whose loved ones are struggling.

Amanda’s father, Jeff, had a near-fatal case of Catatonia. She and her family thought they had run out of options to help her father. She was sitting in his hospital room holding his hand when a thought occurred to her: in all my research on Catatonia one name seemed to come up time and time again: Dr. Max Fink. An idea occurred to her: I'm going to email Dr. Fink on a lark and see if he had any ideas on how to help my dad. She didn't expect a response at all, but typing out that email on her phone in her left hand while she was holding her dad's hand in her right felt like at least she was doing something. Amanda will never forget the feeling she got when she noticed she had a new email 45 minutes later from Dr. Fink. He told her to call him before a certain time that evening. Amanda’s eyes welled up, and she texted her mom and sister in tears. Dr. Fink knew exactly what to do. Amanda’s dad needed more frequent ECT treatments immediately. To fast-forward through a long story, Amanda’s dad is alive and well, and back to his old self. Her family will be forever grateful to Dr. Fink for being there for them when they desperately needed help. 

When Dr. Fink introduced Amanda to Belinda who wanted to start a foundation to bring awareness to Catatonia and ECT, she knew she needed to help. Amanda could not be more supportive of The Catatonia Foundation's mission to help prevent other people from suffering the way her family did. She wants The Catatonia Foundation to be a resource that would have been useful to her family when her dad was so sick. She is honored to help build this foundation and honored to help acknowledge Dr. Fink's expertise and vast contributions to the field of Catatonia.

 

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Michael Peters

Michael has expertise in creating successful businesses and events, marketing, storytelling, speaking, and public relations. He has designed and created innovative and beautiful gardens in his landscaping business for 23 years and is the creator and founder of Dance Meditation Technique, a movement and meditation practice. He is a poet and a musician and involved in the creative community in Detroit. He was the curator and manager of Motor City Fun Night which involved negotiating contracts, sound, security, green room, and backstage talent. 

Michael is the father of two beautiful daughters. His younger daughter, Anja, suffered from the symptoms of Catatonia for over a year and a half before receiving curative treatment. He spent a great deal of resources - both time and money - trying to help Anja. Nothing seemed to help her and her situation became more dire as she was determined to take her life. Seeing no other options and finally coming to the realization that ECT may be her best option for curative treatment, Anja was admitted to the hospital at the University of Michigan. Her symptoms subsided after four ECT treatments and she is now cured and thriving.

After experiencing and witnessing the frightening repercussions of Catatonia, Michael felt that there was no choice but to try to be helpful so others could suffer less. Michael has an emotional connection to the subject of Catatonia and very specific direct insight into what Catatonia is after seeing his own child go through it. Michael states, “There’s a more acute awareness as a parent because we are living with it and there are subtleties that professionals don’t witness and could miss.” Michael would like to see The Catatonia Foundation help increase proper diagnosis and consequently save lives. He hopes The Catatonia Foundation will help to save tremendous time, money and undue hardship for families whose loved ones are suffering with Catatonia.

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Julie Sullivan, R.N., B.S.N., M.S.A.

Julie gained a unique and extensive perspective of, and expertise within, the healthcare field over her 36-year career, before retiring from her final role as Director of Contract Negotiations for Wayne State University (WSU) School of Medicine in Detroit, Michigan in 2019 to pursue personal passions, one of which is being a volunteer at a local hospice facility.  She has worked for a variety of healthcare-related organizations: an academic non-profit hospital that later joined a non-profit hospital system; an allopathic medical school as part of a university structure; a non-profit academic physician practice group formed from 19 separate non-profit and for-profit academic primary and specialty care physician practice plans; and a non-profit research and educational organization.  

 

Within the hospital environment, which all took place at Children’s Hospital of Michigan (CHM), Julie held the following positions over time:  Nursing Assistant and Staff/Charge Nurse on an inpatient unit, a Research Nurse for a Multi-Center Pediatric Hematology/Immunology Transfusion Safety Study (in the mid-to-late 1980s…), Hospital Operational & Capital Budget & Financial Analyst, Hospital Finance Cost Report & Sr. Reimbursement Specialist, and Graduate Residency Program Manager.  In that role, Julie managed all aspects, including recruitment activities that resulted in the recruitment of Dr. Eileen Donovan-Lopez!, for 1 categorical program & 3 combined residency programs, for a total of 120 pediatric non-surgical residents/yr. as well as broad oversight of pediatric subspecialty fellowship programs.

 

Julie eventually left CHM to work at WSU School of Medicine. Her clinical, operational, finance, and graduate medical education background, knowledge and expertise were the perfect fit for her role as Director of Contract Negotiations and also while the 19 separate physician practice plans for the various academic departments within the School of Medicine merged over the next seven years to form a single academic non-profit physician practice group.  Julie negotiated contracts with non-profit and for-profit hospitals and hospital systems; research organizations; other schools within the university; foundations; private physician practice groups; academic physician non-profit and for-profit practice groups; vendors; individuals, etc.  

 

Bottom line:  Julie has spent her entire career advocating and often battling for patients, parents & families, residents, fellows, medical students, physicians, hospitals, medical schools, and graduate medical education in general and now, she will continue to do so on behalf of The Catalonia Foundation.

 

Julie was a strong support person for two of her close friends, Belinda and Eileen, who had children dealing with symptoms of Catatonia. Julie was always there to lend an ear and provide any resources she could. It was helpful to both of her friends as they navigated uncharted waters in the healthcare system, dealing with frustration, overwhelm and exhaustion. Julie is a loyal and devoted friend and colleague. She continues to mentor and teach others using her extensive skills and gifts.

 

Julie was inspired to help create The Catatonia Foundation by her friends whose children received effective treatment for Catatonia. She wants to help make a difference in the lives of people struggling with Catatonia. Her background in nursing and healthcare administration is helpful in understanding what education and awareness is necessary so patients can receive an accurate diagnosis and proper treatment. 

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Belinda Phillips, JD, LL.M., CFMC

Belinda's career spans over 40 years as an attorney, special needs advocate, and life and wellness coach. She has prior experience as a board member of the Tuberous Sclerosis Complex Alliance, a charitable organization created by four brave mothers almost 50 years ago that is internationally recognized today. She has over 30 years experience navigating the healthcare system personally and advocating for her younger daughter, Marlee, who has many significant medical issues and special needs. 

Belinda’s older daughter, Alyssa, was cured of Catatonia after struggling with the sudden onset of strange and bizarre symptoms for ten months. It took three months to receive a diagnosis and another seven months to learn about highly curative treatment options. It was a very challenging time. Healthcare providers chalked Alyssa’s symptoms up to bad genes, anxiety, or a spiritual breakdown. Belinda was accused of being too controlling and having Munchausen Syndrome by Proxy. On the other side of it, Belinda realized that it didn’t need to be so difficult to get Alyssa the help she needed. When Alyssa came to her with the desire to help others, she knew it was what they needed to do. 

Belinda is grateful that Alyssa was cured and is now thriving in every part of her life. She is confused as to why it took so long to become aware of highly curative treatment options. She was fortunate that she was able to speak with Dr. Max Fink who provided her with a clear path to Alyssa being cured. She is grateful to the University of Michigan ECT Department for their care and treatment that led to Alyssa being cured.  She hopes The Catatonia Foundation can help provide that clear path for others by raising awareness of the many faces of Catatonia and how to effectively treat it. She also hopes The Catatonia Foundation can help alleviate the stigma associated with the diagnosis of Catatonia and ECT by sharing the success stories of the board member’s families and others.  

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Alyssa Phillips, MA - Honorary Non-Voting Board Member

Alyssa has been a special education teacher for eight years. She received a Bachelor's Degree in Neuroscience and Biology from Brandeis University and a Masters Degree in Autism, Intellectual Disability and Childhood Education from Teachers College, Columbia University. Her hobbies include rock climbing, roller skating, hip-hop dancing, hiking and reading. 

Alyssa was diagnosed with and cured of Catatonia. She doesn’t remember much of the experience. She knows that it was really challenging to get a diagnosis and then even more challenging to get directed to the right treatment. Alyssa feels extremely fortunate that she was cured and very grateful to her mom, Dr. Max Fink and the ECT Department at the University of Michigan. She knows that the outcome could have been much different and that she would most likely have been institutionalized for life without proper treatment. Alyssa wants to do what she can to help others have the same opportunity she did. It was not an easy decision to go public with her experience due to the stigmas associated with Catatonia and ECT. Her desire to overcome the stigma and help others won out.

Alyssa would like The Catatonia Foundation to be a resource for patients, caregivers and physicians. Catatonia is not well-known even among medical professionals. Her goal is to raise awareness so that people do not have to suffer like she and her family did. She would like physicians to be aware of and educated about Catatonia, make the appropriate recommendations for treatment and be able to reassure patients about the efficacy and safety of treatment. 

Medical Advisory Board

The Medical Advisory Board serves the mission of The Catatonia Foundation by providing medical expertise and guidance in the dissemination of medical information for purposes of awareness and education for medical professionals, other healthcare professionals and the public, and for research within the medical community.  

The Medical Advisory Board has no governing function within The Catatonia Foundation.

The current members of the Medical Advisory Board are:

Max Fink, MD - Honorary Member

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Dr. Max Fink is a world-renowned expert in Catatonia and Electroconvulsive Therapy.  He has authored or co-authored many books and over 800 articles, including two books on Catatonia and five books on Electroconvulsive Therapy. His most recent book on Catatonia, The Madness of Fear: A History of Catatonia, was published in 2018 and his most recent book on ECT, Electroconvulsive Therapy:  A Guide for Professionals and Their Patients, was published in 2009. He founded the Journal of ECT in 1984.

Dr. Fink’s studies of ECT began at Hillside Hospital in 1952.  In 1973, he organized the ECT Department at Stony Brook University. His interest in Catatonia began after he joined Stony Brook where his studies of Catatonia influenced the American Psychiatric Association to acknowledge that Catatonia was independent of schizophrenia.  He was responsible for identifying Catatonia’s many expressions and its effective treatments, and encouraged its consideration as a distinct systemic medical illness.

In 1996, Dr. Fink was involved in developing protocols to identify, verify and treat Catatonia which have been widely accepted (the Bush-Francis Catatonia Rating Scale). He has been involved in developing and publishing protocols for optimal treatment in Catatonia and published a definitive paper in 2016 called Optimizing ECT Technique in Treating Catatonia in the Journal of ECT. 

Dr. Fink has received many prize awards for his research over the course of his career. His career spanned more than 65 years and at the age of 100, he is still involved in reviewing cases and writing about Catatonia and ECT. For more information on his impressive career, go to the
Max Fink Papers at Renaissance School of Medicine, Stony Brook University.

Our founding board of directors are very grateful for Dr. Fink’s extraordinary work in Catatonia and ECT and for the care and compassion he has shown our family members and us. Three of our board members had personal contact with Dr. Fink about treatment for our loved one’s who were diagnosed with Catatonia and one of the board members’ loved one was treated by Dr. Fink’s colleague and co-author on several articles.

Professional Advisory Board

The Professional Advisory Board serves the mission of The Catatonia Foundation by providing specific expertise and guidance to the Board of Directors as needed to assist The Catatonia Foundation in achieving its goals.  

The Professional Advisory Board has no governing function within The Catatonia Foundation.

The current members of the Professional Advisory Board are:

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Libby Gill

Libby Gill is an executive coach and award-winning author who helps emerging and established leaders reframe change as an opportunity for growth. She has spoken about hope-driven leadership around the globe and has delivered keynote presentations for many corporations including Bank of America, Honda, Kellogg’s, Marriott International and Caribbean Cruise Lines.


Libby’s lifelong interest in mental health advocacy stems from a family history of mental illness and suicide. Her stepmother suffered from chronic depression and died by suicide; her brother, a retired college professor, lives with schizophrenia.


A former head of communications for media giants Sony, Universal and Turner Broadcast, she has an extensive background in publicity, advertising and promotion. She was a columnist for The Dallas Morning News and has written five books, including her most recent book, The Hope-Driven Leader: Harness the Power of Positivity at Work. She is a frequent media guest who has appeared on the CBS Early Show, CNN, Inside Edition, NPR, the Today Show, and has been quoted in many national publications including Business Week, Time, The New York Times and The Wall Street Journal.
 

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Amy S.F. Lutz, Ph.D

Amy S.F. Lutz's writings about severe autism have been featured on many platforms, including Psychology Today, The Atlantic, Slate, and Spectrum. Her first book, Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, was published in 2014 and her second book, a collection of essays called We Walk: Life with Severe Autism, was published in 2020. She is a founding board member of the National Council on Severe Autism (NCSA) and holds a PhD. in the history of medicine from the University of Pennsylvania. She lives outside Philadelphia with her husband and five children.

Amy has written and spoken extensively about the benefits of electroconvulsive therapy for extreme unprovoked aggression and self-injury in autism. Amy shares that “...the clinicians who treat autistic kids with the highest levels of aggression and self-injury generally agree that these behaviors are not ‘part of the autism,’ as parents may have been told, but are often caused by co-morbid affective or catatonic disorders that can be treated the same way they would be in the neurotypical population: with medication, and, if that fails, ECT.”

Amy is a senior lecturer in history and sociology of science at the University of Pennsylvania.  She has a Bachelor's Degree in Psychology and English from the University of Pennsylvania, where she graduated summa cum laude.  She has Masters Degrees in Fiction Writing and Literature from Indiana University and a Ph.D. in History and Sociology of Science with a graduate certificate in Social, Cognitive, and Affective Neuroscience from the University of Pennsylvania.


Our founding board member, Eileen Donovan-Lopez, M.D. was struggling with her autistic son’s severe and unprovoked aggression when she read Amy’s book about her journey to get ECT treatment for her son. After reading the book, Eileen knew what she needed to do and eventually was able to have her son admitted to University of Michigan for treatment. She has been so grateful to Amy for sharing her son’s story. 

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Julie Pepera, MSI

Julie Pepera is an Instructional Designer and Corporate Trainer with nearly 10 years of professional experience delivering high-impact training solutions.  She is a creative thinker with a holistic approach to Instructional Design based on a thorough needs analysis.  She has a proven ability to provide the best return on investment based on organizational goals. Julie has a Masters Degree in Information/Archives and Records Management from the University of Michigan, School of Information.

Julie is an expert at im
plementing a variety of training solutions, including 

  • Computer-Based Training

  • Training Videos and Interactive Tools

  • Online Training Facilitation


The highlights of Julie’s career includes the following:

  • Over 99% of training attendees surveyed would recommend it to colleagues

  • Created Master of Marketing Training for over 300 Marketing Team Members

  • Created a training program to collect patron stories resulting in tens of thousands of dollars in grants for public libraries nationwide

  • Designed and implemented a training program for the state of Florida that increased product usage and helped retain $1.2 million in product renewals

  • Helped the state of Tennessee integrate eResources into the classroom, resulting in increased test scores and greater student achievement

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