Friend To The PRI Needs The Help Of The Community

Charcot Marie Tooth Disease is an unpredictable, progressive disease which deteriorates the nerves that connect the brain to the muscles and causes the muscles to weaken. It is the most commonly inherited neurological disorder affecting 1 in 2,500 people. I was diagnosed at age five.

Childhood meant countless doctor and hospital visits, leg braces and corrective surgeries to perform ankle fusions, tendon transfers and bone grafts. My symptoms worsened considerably in my 30s and 40s. My balance has been affected and it’s challenging to safely walk across the room. I’ve had three falls resulting in broken bones over the past seven years alone.

Daily I deal with considerable pain, numbness and instability, along with fear and uncertainty of what my future holds. My disease has progressed so far that I now must use a mobility scooter or motorized wheelchair to move around. Accepting this has been very difficult because I feel like I’m losing my sense of self. Fighting heavy depression has been a constant over the past few years.

I deal with accessibility issues on a regular basis. I can no longer climb stairs, and I’ve had to make modifications to my house like adding a ramp to my front door, grab bars in the bathroom, and moving our bedroom and home office to the main floor. Little things like replacing clothing without zippers and buttons is something I’ve also had to change as my manual dexterity has grown worse.

I struggle with the fact that I am now home bound and dependent on others if I want to leave my house to access my yard, run errands or go to appointments. I gave up driving when it became too dangerous because I could no longer get my foot from the gas pedal to the brake safely.

Even through all of this, I have not given up.

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CMT has taught me many things: the need to be resilient, to remain positive, to look for creative solutions to challenges, and to be humble and ask for help when needed. It’s taught me the importance of family, friends, and community, and it’s enriched me with a deep sense of empathy and compassion.

Two years ago I furthered my education and became a permaculture designer to compliment my husband Geoff’s forestry business. Together, we are building an eight acre food forest complete with fish ponds, fruit trees, nuts, berries, medicinal plants, handicap accessible trails throughout, raised garden beds, and eventually, an off-the-grid greenhouse. Our goal on this site is to harness and slow water and build nutrient dense soils that can provide us with the healthiest food possible. Part of our business plan is to open the site for tours and use it to educate others on what can be done in this Zone 4 cold climate. This expansion of our business, however, cannot happen without me being able to access the land.

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Last year, I became certified to drive with hand controls. I look forward to being able to get out to job sites for clients where I can continue designing perennial food systems and educating people who want to live with a deeper connection to the land.

To do this, I will need a motorized all-terrain model wheelchair as well as a handicap-accessible van equipped with hand controls. This will also allow me to drive myself to medical appointments, physical therapy and run errands.

I’ve contacted every agency I know, but these organizations only have resources to serve a fraction of the people in need, and I’ve run out of options. I’m watching my independence and hope slip away, and this fundraiser is my last resort.

I’ve done extensive research and have been working with Muscular Dystrophy Association and Michigan Agrability to fit me with the proper and adequate equipment. They agree that the combination of an all-terrain wheelchair and accessible van with hand controls WILL reestablish my independence. Any amount that you can donate will be greatly appreciated.

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Michigan Agrability and Easter Seals have offered to match the first $1,000 raised.

To help, to donate or for more information, please visit and share:

More about CMT

The Permaculture Research Insitute

PRI Zaytuna Farm functions as a model farm (in development) and permaculture training facility. Geoff and Nadia Lawton, world-renowned permaculture educators and consultants, lead the project. Much of Geoff and Nadia’s time over the last few years has been spent away from the Institute, consulting and helping set up projects in diverse locales around the world. Seeing the worldwide demand for knowledgeable permaculture consultants and teachers increase exponentially, as fuel and fertiliser prices skyrocket and the effects of climate change, soil depletion and water shortages begin to hit hard, priority and focus is now shifting back to the Institute, where growing the training program will increase the output of quality teachers to help fill the growing need for them.


  1. Have you heard of Dr Terry Wahls who reversed her MS symptoms? I have no idea if this would be a similar disease but it may be worth checking out. She is doing clinical trials at present with MS , Dr Wahls has a book called the Wahls Protocol and started the Wahls Foundation.

  2. I have not heard of Dr Terry Wahls but will definitely look into what she’s doing! Thank you so much, and thank you to PRI for the support. I’m anxious to regain my freedom and independence and get back out there playing in the dirt!

  3. Hi Susan,
    I’m sorry, i do not have any money to share, but i can share a documentation about the discoveries of a german physician (internist) he made in the early 80s – after the tragic death of his son. About eight years ago i do received a not so pretty medical diagnosis, but i refused to accept this diagnosis and began to search in the internet till i, two years later, discovered the knowledge of this physician together with a documentation about his knowledge.
    Give it a try (it’s easy to understand and has subtitles in eight languages, among them english):

    Die 5 Biologischen Naturgesetze – Die Dokumentation (4h11min)

  4. Hi Susan,

    I am so sorry to hear of your extreme challenges and so inspired by your amazing courage and resilience.
    I cannot imagine the multiple daily dilemas you must face and surmount.
    I developed multiple system conditions following severe trauma and have some similar much milder challenges, with extreme weakness and many layers of pain and constant collapses, so I appreciate the challenges you are relating, and I also have found solace in permaculture on my 10 ac farm. I want to help you as best I am able to…
    Have you considered asking Woofers (Willing Workers On Organic Farms) to come in and support you with your work while you face this hurdle?
    Many honest researchers and doctors are finding pathogens not widely recognised such as those in Lyme disease are responsible for many of these conditions, (brain autopsies on patients who died of MS found the white lesions were accumulations of the borrelia LYME pathogen that caused the deterioration of the myelein sheath.)
    The wonderful herbal Bunher Protocol which I have been on helps to reverse combined with the alternative antibiotic developed by Professor Roberts of Griffith University. ! I have done it for 2 years now and had dramatic positive results.
    I have no money either but I hope I can help and also share some significant information.
    Here are some positive thoughts – so much about permaculture offers tremendous hope for full healing – highly nutrient dense organic foods combined with the right treatment protocol!! I am not that familiar with your website so forgive me if I what I say is not relevant or has already been said.
    That has been my project after I found nutrition reversed my sons classic autism and is healing my own conditions…
    As someone who has researched many healing methods over the last 17 years, and am now a home health educator I can verify that there is wonderful healing options available from many well educated Doctors in the herbal and highly nutrient dense approaches, I just wanted to back up the thoughts shared in the other comments.
    Look into the world’s leading healer, Dr Shultz, (herbdoc) a student of Dr Christopher who has healed and reversed thousands of people with diseases and conditions through herbs and intense nutrition, including his own fatal heart condition. I will try to spend some time reading on your condition and finding the right fit.
    If it is a DNA based condition, ensuring the methylation pathways are working will ensure the DNA deletions and mutations don’t manifest.
    Sending you lots of love and strength and support and happy to stay in touch if you need support to find the right help.
    Jannene at

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