Walk and Roll! September 19, 2026

Why I’m Walking for FSHD

I came to FSHD through someone my daughter loves.

When I learned that he was living with facioscapulohumeral muscular dystrophy—and that he was interested in what nutrition might possibly offer—I did what I tend to do when I encounter a difficult health problem:  I started studying.

I am a nutritionist, and I specialize in looking at complicated problems from many directions. I began reading about FSHD genetics, DUX4, muscle biology, metabolism, oxidative stress, inflammation, mitochondrial function, recovery, and the nutritional requirements for building and preserving muscle.

What struck me was the enormous gap between what we are learning about the biology of FSHD and how little has been translated into a comprehensive actionable nutritional strategy for people actually living with it.

Nutrition cannot turn off the genetic cause of FSHD. It is not possible for nutrition to ever be a cure for a genetic disease.

But “not a cure” and “nothing we can do” are very different statements.

I have been studying, specifically, nutrition for FSHD for the past 2 1/2 years.  One of my goals in the next several months, is to fill in my Website with information about nutrition for FSHD in a section that I have created for that. 

As you probably already know, there is very little that we know with certainty about optimal nutrition for FSHD.  In light of this, I have dug deep with uncovering plausible connections which may help with muscle health, in general, and in the context of someone with FSHD. I have not personally done clinic trials. Rather, I have learned about the genetics and biochemistry of FSHD and I have connected that with my education and continued education about "everything": general genetics, biochemistry, chemistry, biology, physiology and the nutritional wisdom and findings of modern nutrition science, early traditional nutrition practices and the nutrition that is deep in our DNA that we have learned about from our evolutionary past.  

Online.

Please come to www.LFCNutrition.com/fshd-articles to see my recent additions. I will continually expand my FSHD pages, through time, as I put in what I have developed over theses past 2 1/2 year, and as I learn more. Please periodically revisit the FSHD part of my site for my current updates. (I am great with nutrition, but not so great with technology. This is my bottle neck, but I have started the process of figuring out how to get more things on my website. Thank you for your patience.)

Free.

I started this path of learning with the idea of helping my daughter's friend who has FSHD.  I offered to him all that I learned for free.  Now that I am offering this beyond that one person,  I want to continue to offer this for free for everyone.

My Learn Feel Choose Nutrition business engages clients interested in using nutrition to help with chronic disease, complex disease issues, weight loss and athletic performance. I learn as I engage with my clients. But I also know that I have a different level of learning, a different type of learning, and a different perspective when I am studying the application of nutrition in a focused way with just the elements of the disease and the science around it. I am gaining a unique learning by studying nutrition for FSHD, that complements the learning that I gain from working with individual clients in my business. Because of this, I will continue to offer all that I discover and all of the perspectives that I come to, about nutrition for FSHD, on my website, for free. I don't have much posted online yet, but I will eventually put all of my work online. It can be found at www.LFCNutrition.com/fshd-articles

Building a map of possibilities.  Possible ways to optimize.  The excitement builds!  🤗

I will share information about nutrition, diet, supplements and lifestyle, but there will never be one perfect “FSHD diet.” People are different. Disease expression is different. Bodies are different. Food access, preferences, tolerances, activity and life circumstances are different.

What we can build is a much better map.

A map of what we know.

A map of what is promising.

A map of what is merely possible and still needs research.

And a practical way for someone with FSHD to look at that map and ask:

What can I optimize today?  What can I optimize in my kitchen? What can I optimize for this next meal? What kind of optimize in my pantry? In my supplement cabinet?

I will share my ideas about optimizing all of these as well.  I will share a variety of ways to make it possible to engage the information into your unique lifestyle.

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Let me start with an introduction to, and a sharing of some actual content.  (Much more detail to come.)

GROWING MUSCLE - IN GENERAL:

I started my investigations of things that we can actively do,  with learning about what we can actively do to grow muscle.

Part of my professional work in Nutrition has increasingly focused on athletic performance and muscle development, in addition to applying nutrition to chronic diseases and complex health challenges.I am also a recent natural OCB pro bodybuilder myself.  I started training for this when I was 62 and I got in my first competition when I was 63, where I won my pro card in the open age category.

I very successfully learned about using nutrition for optimally growing muscle in one population for whom growing muscle is extraordinarily hard - that of older women.  In an information environment of extremely little information about significant muscle growth for this population of people, I was my own beta group of one.

I learned from the exercise physiologists, and the lived experience of the participants in the bodybuilding world.   But I also had to call upon my own deep and broad lived and professional nutritional education and experience because there were a lot of gaps between what is known about building muscle in people in the prime of their lives, and focused far more on men, and building significant muscle in older women, such as myself.  I had to brainstorm an enormous amount, and engage with a great deal of uncertainty, in order to come up with a diet and protocol which worked for me - someone for whom extremely little research as been done and for whom there are only a very few other older women who are doing what I was doing.

With the steep learning curve that that lived experience provided me, I was then ready to do the next deep dive of learning about how to optimally grow muscle in another population for whom growing muscle is even harder - those with FSHD.

I have now spent years studying what allows human beings to build muscle, preserve it, recover from training, and provide the nutrients and metabolic environment for optimal muscle growth.

I have done this study in the context of it’s application to young men in the physical prime of their lives, to older women, and, now, to people with FSHD.

A person with FSHD and an older woman and a young male competitive bodybuilder obviously do not have the same body or the same challenges. But they share some fundamental biology: muscle still needs adequate protein and essential amino acids, especially leucine. It needs an appropriate training stimulus  -  aiming for all-out training, but stopping at a level of intensity that you can fully recover from.  It needs energy, essential fats, adequate whole carbohydrates, targeted micronutrient and nutrient intake, recovery and sleep. And it needs those things delivered in a way that an individual body can tolerate and use.  As an older woman, I had to make many adjustments to the good advice that is given to young men, in the same sport.

I learned what the basics are for everyone to optimize muscle and I encourage you to engage the mindset of a bodybuilder and engage these basic needed principles for optimizing muscle health, and some lifestyle practices which support those lived principles.

GENERAL MUSCLE HEALTH PRINCIPLES:

Ideally, try to always optimize your human body for muscle health.  If a bodybuilder would not do something or habitually does something to prepare their muscles for optimal growth for bodybuilding stage readiness, you should be learning about that and figuring out what version of that is best for you.  Let me give you some examples for which there is virtually no controversy - either for the bodybuilder looking to develop that last 2 ounces of muscle which at the height of their development is extraordinarily hard to do, OR for someone with FSHD who is also looking to add that 2 ounces of muscle which, given their FSHD, is also extraordinarily hard to do.  

• Dietary protein - 1 gram of protein for every pound of your optimal lean body weight.  For most people that is between 100 and 200 grams of protein.  It is much easier to do when some of the protein choices (at least once per day) are the proteins that the bodybuilders rely on for muscle growth - to get enough protein without needing an undo-able amount of food.  As part of one of your daily meals include a very generous portion of : white fish such as cod, boiled boneless skinless chicken breast, 1% fat ground turkey, elk, venison, extremely lean beef, or egg whites.  Yes, these can be made to be extremely tasty!  I will fill you in over time, introduce you to some high-protein online influencers and would love to hear your ideas on this as well.  As a snack, a great deal of protein can come from whey isolate protein powder, non-fat Greek yogurt and non-fat cottage cheese.  Some lean red meat is non-optional for optimal muscle growth - 3 to 7 times a week, or more. And I want you to start thinking about liver once a month.  That is a game changer for many. 
• Leucine from the meal food choices of at least 3 grams for each of your three meals. 
• At least 5 grams of creatine.  This is far more vital for you than for the bodybuilders.  The usual recommendation is 5 grams per day. It is possible that someone with FSHD may benefit from as much as 20 grams per day.  But to you enthusiastic fast-starters.... don't do that right away!!  Start with 2 or 3 gram.  Move gradually to 5.  Hold it there.  Possibly move up from there.  Or not.  Never start with more than 5 grams.  The downside of taking it for the first time before your body is used to it is GI upset.  Yuck!  Start low. It is exceptionally valuable for someone with FSHD because by taking it, our bodies do not need to make as much of it.  It uses up a lot of our body's methyl groups for us to make creatine within our bodies.  With less creatine made by our bodies, we are using up fewer methyl groups.  Adequate methyl groups may help with quieting the DUX4 gene.  
• NO alcohol.  Alcohol is extraordinarily detrimental to the muscle.  Looking at the chemistry and the biochemistry of drinking, it effects the muscles in a way that can start a long-term downward spiral, in the muscles of someone with FSHD.  NO successful bodybuilder would ever drink in the months leading up to a competition.  That also gives us a clue as to what muscles, in general, can and can not tolerate when there is a focus on optimizing. Sometimes willpower is not enough to overpower injury and alcohol injures muscle.  
• NO smoking.
  
  

There is virtually no real controversy for these 5 items for optimizing muscle health. If this is all that you did, you would get quite a lot of benefit!

Go for it!!

But, let's go farther!! This can be quite exciting!!

(There is, also, by the way, much more that I will be sharing about nutrition and supplements for general muscle health and muscle growth.  That will come, over the coming months.)

Then we go from the basics of muscle health, to the particulars of the genetics of FSHD and the biochemistry leading into DUX4 activation and the biochemistry of what is required to repair from the damage caused by DUX4 activation.  

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OPTIMIZING MUSCLE HEALTH - IN THE CONTEXT OF FSHD:

My next question was: What might someone with FSHD need above and beyond, or different from, what we already know about optimizing muscle?

That question led me deep into the genetics and biochemistry of FSHD. I began building a framework that looks at the disease on multiple levels: the genetic abnormality and inappropriate activation of DUX4; the downstream cellular consequences; muscle maintenance and protein synthesis; oxidative and metabolic stress; mitochondrial health; inflammation; recovery; micronutrient sufficiency; and the overall nutritional environment in which all of this is occurring.

My framework is basic: 

PRE-DUX4 activation

• engage in health practices which have a plausible possibility of lowering the probability and frequency and intensity of the next DUX4 activation

POST-DUX4 activation

• engage in health practices which have a plausible possibility of optimizing the clean up and minimizing the adverse effects of an activated DUX4 gene.  

There is quite a bit of scientific information about the genetics and the biochemistry of FSHD - just not direct research of nutrition for FSHD. Let's connect the dots that we do have: 

• We know about how the genetics of FSHD connects with biochemical and biological abnormalities of FSHD.
• We know about biochemical and biological abnormalities and how nutrition is related to them or might be related to them.
• We can then make some inferences about the nutrition which might be useful to address these biochemical and biological abnormalities when they are also caused by the abnormal genetics of FSHD.

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Nutrition for FSHD, is an endeavor of uncertainty. We connect what we know as well as possible and we explore how to engage various possibilities in the kitchen. Here are some of the dots that appear to be connected. 

PRE-DUX4 activation

The DUX4 gene is not always active.  

What helps to keep it inactive?

There are some theories about that and some nutritional responses to these theories. 

• Being more often in a calm "rest and digest", parasympathetic nervous system mode:  LIFESTYLE: Lower your stress.  Meditate and aim to stay in a calm, meditative mind frame during the day. Breath work.  Affirmations. Visualizations.  Gratitude work.  Prayer. Heart rate variability training. Self-talk. Self-hypnosis. FOOD: Ashwanganda.  WORKOUT & LIFESTYLE: Slow meditative walks. Weight training, but NO overtraining. NO long intermittent fasting. NO cold plunges.
• p38 Inhibition:  SUPPLEMENTS: Turmeric (curcumin), resveratrol, quercetin.  ADDITIONAL: ALA, astaxanthin, berberine, boswellia, citrus bioflavonoids, fish oil, HMB, Magnesium, Vitamin A&D, Corceps mushrooms.  FOODS: apples, berries, blueberries, broccoli, cilantro, citrus, ginger, grapes, high omega-3 fatty acids, onions, parsley, salmon, whey, Greek yogurt, lean meat, bone broth, collagen powder, green tea, broccoli sprouts.
• D4Z4 properly methylated.  General methyl groups from diet and supplementation may improve this DNA methylation.  SUPPLEMENTS: Vitamins B6, B9, B12 - all in activated forms - with TMG. SAMe.  Vitamin B2, also activated. Choline as Alpha-GPC. Vitamin K2 as MK-7.  Vitamin K2 as MK-4.  Magnesium.  Zinc.  NAC. Creatine. (Brand and product suggestions to come.)
  
  

POST-DUX4 activation

GENERAL RESULTING NEEDS, AND RESPONSES (with just a few sample nutrients):

• Oxidative stress: astaxanthin, vitamin C, vitamin E
• Inflammation: omega-3 fatty acids, turmeric, blueberries
• Muscle atrophy: creatine, dietary protein from animals, HMB
• Mitochondria damage: CoQ10, creatine
• Cell Membrane Permeability: Carnosine, red meat
• Detox (Glutathione pathways diminish): NAC, S-acetyl-Glutathione
• Low micronutrient levels - zinc, test with CellSciences
• (Cognitive):  Alpha-GPC
• (Gut Health):  probiotic
  
  

INDIVIDUAL BIOCHEMICAL PATHWAYS EFFECTED (with just one sample nutrient noted):

• SIRT 1, 3, 6, 7 -  cilantro
• NRF-2  -  broccoli sprouts
• NAD+   -  NMN
• AMPK -  Proteolytic enzymes
• Autophagy - Intermittent fasting (less intense version)
• Mitophagy  - Urolithin A
• (mTor) -  
• Wnt Activation -  Curcumin
• PARP1 -  Cilantro, berberine

You can see that this gets complex.  What should be done for breakfast?  What should be in our pantry?  What does a snack look like?  What does an optimal day look like?  How does a workout fit in?  How do pre- and post- workout foods and supplements differ for someone with FSHD? What are the best brands of supplements to use?  What should I look for in each possible supplement that I might use.  

I will gradually populate the FSHD section of my website to address these issues and many many more. It will be become clear over time what is optimal to include, in general, and what is best for you in particular to include. This will change from person to person. 

Let's Walk and Roll!

If you would like to support my walk, I would be deeply grateful for your donation which helps support the FSHD Society’s work to advancing research while also supporting individuals and families living with FSHD now.

Nutrition may help us optimize our bodies, right now.
Research may change what is medically possible, in the future.

Please share this page, and my FSHD pages at www.LFCNutrition.com/fshd-articles

Someone may learn just a bit more about how they can better help their own FSHD, or the FSHD of someone that they know, because you shared this.  I will be walking on September 19, 2026.

Come to the walk and say, "Hello!"  

I am so happy to be a part of this event!

Amanda 🌸