About The Catatonia Foundation
The Catatonia Foundation was created by five families whose loved ones or friends received effective treatment for Catatonia after struggling for long periods of time to get an accurate diagnosis and proper treatment.
Each of their stories are unique but they have one thing in common. If they had not received a diagnosis of Catatonia and proper treatment, the outcomes would have been disastrous – they would have lost their lives as they knew them prior to the onset of the symptoms and in some cases, they may have lost their lives.
The impact of the experience on each of the families did not end with effective treatment. They continued to research Catatonia and found that the research on diagnosis and treatment was plentiful. They were confused as to why it had been such a challenge to get a diagnosis of Catatonia and proper treatment.
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Once their family members had recovered and they were able to breathe again, each of the families felt the pull to share their stories to help other people who might be suffering with Catatonia get the help they needed. It wasn’t an easy decision due to the stigma of having a medical condition that affects both behaviors and psychological/mental status. The stigma of having ECT was an even greater deterrent.
Alyssa Phillips was driving home from a date one evening and called her mother, Belinda. She shared that she was tired of having to hide her experience and wanted to get over the shame she felt from the unfair stigma about Catatonia and ECT. She knew the stigma was the result of lack of education and awareness. She wanted to help others. They strategized the best ways to do this and decided that a foundation that shared Alyssa’s and other people’s stories along with information and resources would be the quickest and most effective way to do this. Through their journey, they had been connected with Amanda Gibbs, Eileen Donovan-Lopez, Michael Peters, and Julie Sullivan, all of whose family members or friends had also received effective treatment for Catatonia. Belinda and Alyssa reached out to each of them. Every single one of them felt the same pull to help others and eagerly jumped on board.
A comprehensive strategic plan was drafted that includes:
An informative and educational website for families and providers
Collaborations with top hospital networks to create conferences (both in-person and virtual) to educate healthcare providers about Catatonia diagnosis and curative treatment options
Catatonia awareness campaigns both in the media and on social media
Collaboration with medical schools to include Catatonia diagnosis and treatment in their curriculum
Exhibits at annual meetings of specialists so that healthcare providers who may come into contact with patients with symptoms of Catatonia will know what to look for to aid in patients receiving accurate diagnoses
Practical information (advocacy, information, and resources) and hope (real life stories of successful treatment) for families dealing with Catatonia
The Catatonia Foundation was formed as a nonprofit corporation on December 5th, 2022 and it received its 501(c)(3) tax exempt status within days of filing its application.
The strategic plan is extensive and it will take some time to accomplish The Catatonia Foundation’s goals, but we are committed to having a significant impact on bringing awareness to Catatonia and its highly curative treatment options because we believe that no one should lose their life to Catatonia.
The Catatonia Foundation is entirely staffed by volunteers and all donations are used for specific needs that will fulfill our mission.
Our Vision
The vision of The Catatonia Foundation is that no patient’s life will be lost to Catatonia because proper diagnosis and treatment has a high likelihood of curing this devastating and sometimes fatal disorder.
Our Mission
Our mission is to create awareness and provide education to both the public and healthcare professionals so that proper diagnosis can be made and people suffering from this devastating yet curable condition can receive the treatment they need. We will also support individuals and their caregivers in learning about and advocating for life-saving treatment.
Tribute to Dr. Max Fink
Dr. Max Fink’s dedication to the field of Catatonia and ECT is unsurpassed. When our family members were suffering and in desperate need of help, several of us contacted Dr. Fink, not expecting to receive a response from an internationally-renowned expert. He responded to each of us immediately. His advice, expertise and wisdom ultimately led to our family members surviving and thriving.
Dr. Fink is the inspiration behind The Catatonia Foundation: an organization created to raise awareness about Catatonia and the curative treatments available to patients.
Alyssa Phillips had the opportunity to interview Dr. Fink and portions of that interview are viewable on this website.
We will always be grateful to Dr. Fink for his amazing contributions to the field, and for his generosity of time and effort when our family members needed him most.