This past summer, while taking a pit stop at my friend’s farm stand in Amagansett, NY, she introduced me to the fabulous Allison Moore. No, Ally is not an "A-List celebrity" that anyone “should” know about. She is an energetic, passionate, kind and slightly lopsided soul with a memorable raspy voice who is making a real difference. So, not only should you know about her, but you also need to. And this is why.
Allison Moore lives with Charcot-Marie-Tooth disease (CMT). According to National Institutes of Health, CMT is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States (and 2.6 million people worldwide, although experts believe the number could be much higher). CMT is also commonly called hereditary sensory and motor neuropathy. This means that this inherited disease causes problems with sensory and motor nerves—the nerves running from the arms and legs to the spinal cord and brain, delivering crucial sensory information and relaying instructions for movement back to the muscles. Those living with this disease lose strength in the muscles in the feet, legs and hands, often unevenly causing deformity as muscles waste away (atrophy) at different rates (the reason I called Allison “lopsided”!). Researchers recognize five main types of CMT disease and many sub-types.
While we've all heard of Multiple Sclerosis (MS), Muscular Dystrophy and ALS (all neurodegenerative diseases, as is CMT), why is CMT so unknown? I mean, more people are affected with CMT worldwide than with MS! Needless to say, I was about to get a much welcomed crash course.
So back to meeting Allison this summer—upon our introduction, we shared many medical horror stories from doctors to misdiagnosis (I am glad that my experiences living with chronic illness can come in handy!) until Allison blurted out, “Can you help me change my diet? Have you ever worked with anyone with CMT?” I replied “Honestly, no, I have not, but I have worked with several people with MS.” She went on, “I am the Founder of the Hereditary Neuropathy Foundation (HNF) and I am determined to find a cure for this disease! Nobody has ever looked at the effects of diet on those living with CMT, and I want to be a guinea pig!” I gave Allison my card, and we went our respective ways.
After an email exchange that evening, we had lunch on the calendar for the following week. And the rest is history! She asked me to keynote the first ever Patient-Centered CMT Summit (to say I was honored is an absolute understatement), and I began working with Allison Moore in July 2016 to change her diet and determine if food could be “thy medicine” for those living with CMT. We captured everything on film, from her initial evaluation to our trip to the grocery store and, of course, our marathon cooking session—the services that define my one on one work with clients. You can see a brief video preview here.
Ally followed a specific menu that I created for her—a “nutrition prescription” that was the result of collaboration with integrative functional dietitian colleague, Iman Marghoob, MS, RD. It included a meal plan with supportive supplementation; after two months, not only was Allison feeling better, but also her blood work also improved, from cholesterol to triglycerides and liver function. But this is only the beginning of Allison’s “edible medicine” story and hopefully that of so many living with CMT.
This is what Allison’s “diet” looks like, but this is only the first phase of our work together:
- 80-90% whole foods diet (organic as often as possible)
- Neuro-protective foods including healthy fats like avocado, coconut oil, extra virgin olive oil, almonds
- DNA-protective foods such as broccoli, cabbage, kale, radicchio, berries, matcha tea (potentially slows or reverses damage of DNA)
- Naturally nitrate-rich foods like beets and chard to enhance blood flow and improve vessel elasticity
- No gluten (it can be pro-inflammatory for many)
- Limited dairy (same as above)
- Limited starchy carbohydrates like grains and beans
- NOTHING artificial, from preservatives to sugar to flavors to dyes
- Limited refined sugar
- Little to no alcohol
The bottom line is that Allison’s starting point was basically embracing a clean eating approach. Doing just this improved her blood work, as noted above. Next up, we will likely be following the lead of Dr. Terry Wahls, world-renowned doctor who stopped the progression of her grim MS diagnosis with dietary intervention. Please stay tuned for more on Allison and her incredible journey by staying connected on social media with Hereditary Neuropathy Foundation.
As I delivered my keynote to an audience of over 150—about 40% of which included courageous people living with CMT, some with leg braces and some without, some in wheelchairs with respirators, but most without—I was moved to the core and incredibly humbled by the people I had the opportunity to impact. In turn, many made a great impression on me including Estela Lugo, Jenny Decker, Bernadette Scarduzio, and so many others.
So, thank you to this amazing community for embracing a different kind of expertise and allowing me to bring a necessary conversation to the table—food can surely be thy medicine. Now let's prove it!