According to the CDC, in the United States alone, 3.4 million people have epilepsy, with around 470,000 of those being children. Epilepsy medications can be effective in controlling seizures in around two-thirds of people with epilepsy; however, around 30 to 40% of individuals with epilepsy are resistant to these medications and require alternative treatments to keep their seizures under control.

In a move to explore more effective therapies, multiple natural research nonprofits have teamed up to examine the potential of functional mushrooms as another means of managing the symptoms of childhood epilepsy. This collaborative effort will gather data for an observational study, which will greatly contribute to our current understanding of functional mushrooms and their anticonvulsant properties, offering a potential new hope to families who have not seen improvements with traditional epilepsy therapies.

The inspiration behind the study

Girl on beach

Image source: Lily’s Lighthouse

The research project was initiated by Lily’s Lighthouse, a California-based nonprofit established in 2021 by Sarah-Kate Boylan, Lily’s mother. Lily, diagnosed with epilepsy as an infant, experienced up to 50 seizures a day. Her early years consisted of numerous hospital visits and unsuccessful attempts with various medications to control her seizures. Driven by desperation, Sarah-Kate began looking into preliminary research on the potential benefits of non-psychedelic, medicinal mushrooms. 

Notably, reishi mushrooms were identified for their anticonvulsant properties, and Lion’s Mane mushrooms demonstrated the capability to create new neural connections and repair nerve damage. Out of curiosity, Sarah-Kate and her husband decided to experiment with a 100% fruiting body mushroom blend, Sacred 7, by Naturealm, a company specializing in functional mushrooms. To their surprise, they noticed an increase in calmness and focus, improved mood, and enhanced energy levels shortly after beginning the supplement.  

Encouraged by these positive effects, they decided to introduce the supplement to Lily in hopes that it might ease the side effects associated with her seizure medication. However, they had no anticipation of the mushroom blend directly impacting her seizures. 

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Remarkably, Lily’s seizures dramatically reduced after starting the supplement, and she began to show significant developmental progression like enhanced communication abilities and improvements in fine and gross motor skills. Most impressively, Lily went five whole months without experiencing a single seizure, and she now only encounters them on occasion instead of multiple times per day.

Inspired by these astonishing outcomes, Sarah-Kate Boylan founded Lily’s Lighthouse not only to share Lily’s success story but also to advocate and gather funding for functional mushroom research as a treatment option for epilepsy. Lily’s Lighthouse has since initiated a study to systematically gather data from other epilepsy patients who have seen results by using functional mushrooms.

“There is an urgent need for principled research focusing on the effectiveness of medicinal mushrooms and their potential to improve quality of life for people living with epilepsy,” said Sarah-Kate. “Through this collaboration, we hope to publish outcomes of a retrospective study for the treatment of epilepsy. We plan to further our research campaign to prove efficacy that will eventually result in a mushroom therapeutic for the treatment of epilepsy.”

A search for alternative epilepsy treatments

The observational research study will collect data from individuals who use functional mushrooms as a part of their epilepsy treatment regimen. The data collected will provide further evidence regarding the safety and effectiveness of these treatments, which could help guide clinical research and therapeutic applications in the future.

Participants will be asked to provide information about their epilepsy symptoms, the frequency and severity of their seizures, any additional treatments they are using, and the specific effects that they observe after incorporating the mushroom supplements into their treatment plan. The data will be collected over a set period to monitor the changes and outcomes associated with the use of functional mushrooms. 

The data will also be evaluated to determine the impact of the supplements on the overall quality of life for children with epilepsy, including improvements in mood, cognitive function, and daily activities. This information will greatly contribute to the current body of knowledge surrounding the use of functional mushrooms for epilepsy treatment, providing families with a novel, natural adjunctive therapy backed by scientific evidence and personal testimonies from those who have experienced the benefits firsthand.

Advocating for non-traditional therapies and patient rights

The study will be led by Matthew X. Lowe, Ph.D., who serves as the Executive Director and Chief Scientific Officer at Unlimited Sciences and the Research Director at the Realm of Caring Foundation. Both nonprofit organizations are committed to advancing the understanding and acceptance of non-traditional therapies for epilepsy and other health conditions. Their joint efforts in leading the study will push innovative research forward and make way for alternative epilepsy treatment strategies.

Unlimited Sciences focuses on psychedelic research, leveraging extensive data collection to educate the public and guide the development of practical, informed approaches and policy-making around psychedelic usage. Their specialty in data collection will greatly benefit the study’s foundation by incorporating a more rigorous and evidence-based approach to understanding the therapeutic potential of functional mushrooms in epilepsy treatment.

Realm of Caring (RoC) compliments the efforts of their study with their history of advocacy for alternative therapeutics. Since 2013, RoC has been committed to the research of non-traditional healthcare options, especially the widespread recognition and acceptance of cannabinoid-based therapies.

RoC’s work has significantly contributed to the scientific understanding of cannabis therapies and the practical support of patients using these treatments. From conducting several detailed observational studies to providing comprehensive resources for those considering cannabinoid therapy, RoC has been a crucial player in driving forward the conversation around destigmatizing cannabis as a legitimate medical research treatment option. 

Along with their research and education initiatives, RoC also advocates for patients’ rights and emphasizes the importance of access to a broad spectrum of treatment options, whether that be cannabis or functional mushrooms. 

“Functional mushrooms such as lion’s mane and reishi have long been recognized for their medicinal properties, but only recently have we begun to better understand their unique therapeutic potential,” said Dr. Lowe. “At Realm of Caring and Unlimited Sciences, our common goal is to continue to lead high-impact and innovative research that may increase access to life-changing therapies, such as Realm of Caring’s work with CBD as an epilepsy therapeutic. Our hope is that our collaboration with Lily’s Lighthouse will provide real-world data to identify health outcomes of functional mushroom use in patients with epilepsy.”

The road ahead

Although the preliminary reports on lion’s Mane and reishi are promising, there are not many human studies to fully support the use of functional mushrooms for epilepsy treatment. By gathering more practical data, the initiative can build a more robust scientific case for the use of functional mushrooms in epilepsy care.

Anecdotal evidence often plays a crucial role in the early stages of medical research, offering insights that can lead to more in-depth scientific studies. While the clinical application of this new treatment option would require more scientifically validated evidence, stories from individuals and families who have observed improvements offer hope and a basis for future research.

If you or someone you know are interested in the study or have been using functional mushrooms to treat epilepsy, please visit Unlimitedsciences.org/functionalmushrooms or fill out the contact form on the Lily’s Lighthouse website.