Advance Metabolic Neurology

A Metabolic Collective Workstream

Raising Awareness, Advancing Progress

Our Advance Metabolic Neurology Initiative, led by volunteers Kristen Tidwell and Janet Ebos, is dedicated to advancing the field of metabolic neurology by taking action to increase awareness and accelerate progress. Although ketogenic therapies have been used to treat pediatric epilepsy for more than a century, they have yet to gain widespread adoption in other areas of neurology.

This mission’s success begins with creating a supportive community for individuals and families affected by neurological disorders who are incorporating metabolic therapies into their treatment or prevention plan. We will work together as a team to achieve these two core objectives:

1. Increase Awareness of Metabolic Neurology:

Our volunteers will promote the groundbreaking work that has already been done by pioneering researchers such as Dr. Matthew CL Phillips, who coined the term Metabolic Neurologist.

We commit to amplifying this research by sharing it with media, publications, and other organizations. We will post scientific studies on social media and other community groups to boost conversation and curiosity.

We acknowledge the essential need to centralize all research on metabolic therapies for neurological disorders in a single, user-friendly location online, similar to how Metabolic Mind details metabolic psychiatry research. Our advocates will play a key role in the development of this database. 

Currently, we are recruiting patients to share their stories of recovery, symptom reduction, or improved quality of life using metabolic therapies for their neurological condition in these three ways:

• Submit your THINK+SMART metabolic strategies to Metabolic Mind, which is showcasing stories of how metabolic therapies positively affect brain health.

• Contribute to a speakers bureau that pairs patients with platforms where they can share their lived experience, from podcasts to conferences. Our long-term vision is to help patients develop the skills they need to confidently and effectively tell their stories. 

• Be featured in a case report. Our goal is to connect patients with researchers who will publish case reports.  

2. Accelerate Progress of Metabolic Neurology:

There remains a pressing need for more clinical trials exploring ketogenic therapy as a potential treatment for the most common progressive neurodegenerative disorders, such as Alzheimer’s and Parkinson’s. For difficult conditions such as ALS and Huntington’s Disease, the fact that only one case report exists for each using time-restricted ketogenic therapy is grossly inadequate and reflects an urgent research gap.

We are issuing a global call to action for more metabolic neurology research to be completed for these devastating disorders.

Our efforts will center on championing a rapid expansion of research through these initial steps:

• Find neurologists/researchers who will write up case reports on their patients using metabolic therapies as a treatment. 

• Prioritize collaboration by connecting researchers and clinicians for networking opportunities.

• Support educational and training opportunities for students eager to learn more about metabolic neurology.

• Build relationships with other metabolic neurology nonprofits, such as the Charlie Foundation for Ketogenic Therapies, to expand our reach.

• Connect patients with opportunities to participate in clinical trials.

• Engage potential donors and crowdfund in support of the research needed to elevate this field, including case reports/case series, systematic reviews, meta-analyses, pilot trials, and randomized controlled trials. 

We appreciate your interest in working with us to drive progress in the field of metabolic neurology so that hope and a plan can be offered to those desperately searching for both.