Tag: #MND

  • Embracing Life and Opportunities: Enjoy the Journey

    Embracing Life and Opportunities: Enjoy the Journey

    Life isn’t about waiting for the storm to pass, but learning to dance in the rain. As an ALS patient, I, Bernard Muller, have been embracing life and opportunities that have come my way. Since my diagnosis in 2010, I’ve faced complete paralysis, dependence on a ventilator, and the loss of speech. Instead of seeing these as adversities, I’ve learned to transform them into opportunities, unlocking a new realm of experiences and possibilities.

    The Power of Positivity and a Strong Support System

    Keeping a positive mindset when battling ALS is challenging, but not impossible. Each day brings its trials, but also its small victories, joys, and moments of resilience. The patience I’ve developed along this journey and the power of the human spirit that I’ve discovered within myself have become my most significant assets. Beyond my personal mental strength, I am fortunate to have an incredibly devoted care team by my side. They offer me 24/7 support, showing unwavering compassion and dedication. This team is my rock, my pillar of strength, and I am eternally grateful for them. You can read more about how my family and I are coping with ALS in a previous post, “Living Apart Yet Together”.

    Embracing Opportunities through Technology

    Technology has been my beacon of hope amidst adversity. It has allowed me to overcome my loss of speech and express myself using eye-gaze technology to interact with a speech computer. The Tobii eye gaze computer has become an integral part of me, it’s like an extension of myself. It even contains my own voice, which I had the foresight to voicebank in 2016. This innovation has opened up a world of creativity and self-expression, allowing me to generate art using AI. Partnering with technology, I’ve uncovered an empowering avenue to express my creativity and share my journey.

    Thriving, Not Just Surviving

    My journey with ALS isn’t just about survival; it’s about thriving and finding joy in life, however it presents itself, and being proactive, not just reactive. Making every breath count, and more importantly, it’s about embracing life and opportunities that arise along the way.

    Embracing Life and Opportunities through AI Art and Beyond

    Adversity has a unique way of unveiling opportunities. With ALS, I found a new avenue for expression – AI art. By merely using my eye movements, I’ve created art, a process that has proven deeply fulfilling and therapeutic. AI, in general, has transformed my life. I use it for writing emails, blogs, and social media posts, analyzing stocks, organizing auctions, even making music. It’s not just about creating art, but sharing my journey, my emotions, and resilience with the world. I’ve completely embraced AI, and it has greatly enriched my life.

    Embracing Life’s Canvas, Painting My Journey

    Through my journey with ALS, I’ve realized that life is an ever-evolving canvas. Despite my physical limitations, I continue to paint my canvas with vibrant colors of joy, resilience, and positivity. See opportunities instead of obstacles, strengths instead of weaknesses. Embrace life to the fullest, to dance in the rain, to celebrate each day as a gift, and to cherish the beauty of the human spirit and resilience.

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  • When Eyes Speak, Art Listens: Eye-Gaze AI Art auction on June 21, World ALS Day.

    When Eyes Speak, Art Listens: Eye-Gaze AI Art auction on June 21, World ALS Day.

    Hello everyone,

    I, Bernard Muller, have some exciting news to share with you. Having long embraced technology to overcome the adversities brought by my ALS/MND diagnosis in 2010, I have extended my creative and entrepreneurial spirit to the realm of AI-generated art.

    On June 21st, World ALS Day, I will be hosting an AI Art Auction on eBay, presenting the “Treeway AI Art Collection,” a series of art pieces crafted through the union of human spirit, eye-gaze technology, and the power of artificial intelligence.

    I was diagnosed with ALS/MND, a condition that gradually took away my ability to move and speak, but not my determination. Using an eye-gaze computer and artificial intelligence, I’ve crafted captivating pieces of eye-gaze AI art, each symbolizing the resilience of life and the relentless progression of disease.

    This collection, available for viewing at my gallery, represents a groundbreaking fusion of art, technology, and human endeavor. Each piece communicates my journey, providing a striking visual narrative of my perspective and experience with ALS/MND.

    As a leading figure in the fight against ALS/MND, my life’s work has been dedicated to battling this condition. This auction not only serves as an extension of that mission but also continues my quest to demonstrate the boundless capacity of creativity and determination, even in the face of adversity.

    Mark your calendars for June 21st and for more details about the auction, take a look here.. This event is not just about acquiring a unique high-end AI artwork. It’s about supporting a cause, joining a journey of resilience and creativity, and making a real difference.

  • Revival Through AI: My Journey from ALS Patient to AI Art Creator

    Revival Through AI: My Journey from ALS Patient to AI Art Creator

    Life. It’s an unpredictable tapestry, woven with countless threads of joy, sorrow, triumph, and adversity. As an ALS patient, I have become acutely familiar with the unique threads of my tapestry – the trials, the resilience, and, recently, the incredible revival I’ve experienced, thanks to advances in technology.

    The battle with ALS is relentless, as those familiar with the condition will know. When I was first diagnosed, I was overwhelmed by the grim prognosis. But I resolved to take every opportunity to fight and to continue experiencing life to its fullest. Recently, one of the most significant of these opportunities came in the form of going on a ventilator.

    For many, going on a ventilator might signal a defeat, but for me, it was a turning point. I started to have more energy, more breath in my lungs to keep me going. I realized that while my body may have limitations, my spirit does not. There was still so much to live for, so much to explore. My focus shifted from merely surviving to thriving.

    One of the ways I’ve chosen to thrive is through embracing technology to its fullest extent. Going on a ventilator was just the beginning. From there, I began to harness a variety of technologies to improve my quality of life. I utilized an eye-gazed computer that allows me to interact with the world through the movement of my eyes. It has been a window to the world for me, allowing me to communicate, learn, and create.

    It wasn’t long before I stumbled upon the concept of artificial intelligence (AI). What a fascinating, expansive field! I dedicated myself to becoming an autodidact, learning all I could about this breakthrough technology. The more I learned, the more I realized its immense potential. And with my newfound energy, I had plenty of time to dive in.

    And dive in, I did. I began to create AI art using my eye-gazed computer. I developed a method of communicating with the AI through eye movements, directing it to create visual masterpieces based on my vision. These creations are now proudly displayed in my collection on OpenSea, a testament to the boundless possibilities of technology and human resilience.

    In many ways, I’ve found joy, a renewed spirit, and a deep sense of fulfillment in this unexpected journey as an AI artist. Each day is a new opportunity to explore how technology can enhance my life further, how it can continue to weave the vibrant threads of my tapestry.

    Now, I wake up every day with a renewed sense of purpose. I’ve become a part of something bigger than myself, a part of a community that transcends the limitations of physical ability and disease. With every piece of AI art I create, I am not just expressing my creativity but also telling a story of resilience, courage, and revival. And I believe that if my journey can inspire just one person to keep fighting, to keep exploring, to keep creating despite the odds, it will have been worth it.

    I share my story with the world as proof that our spirits are indomitable. In the face of adversity, we can adapt, learn, and create beautiful things. I am a living testament to that, an ALS patient who found revival in the realms of technology and AI. So, I encourage you, no matter what battles you’re facing, embrace your potential, harness it, and let it fuel your journey to something extraordinary.

    Every adversity we face can be the catalyst for a new beginning, a new way of being, a new life. So here’s to embracing the wonders of technology, to creating beautiful AI art, and to the indomitable human spirit that makes it all possible. My revival continues, and so does my journey. Each day is a new canvas, waiting for the touch of my gaze to bring it to life. And I wouldn’t have it any other way.

    “Someone can and will find a way, why not be that one”

  • Entrepreneurial scientist…

    Entrepreneurial scientist…

    HiResI regularly hear leading scientists say that patients can make a difference by being closely involved in projects that could ultimately lead to breakthroughs for their diseases. On the other hand, I also hear researchers say “leave the science to the scientists” and that we shouldn’t get involved because of our biased opinions. Contradictio in terminis or a rusty scientific paradigm?

    You can’t deny that a certain subjectivity exists when it comes to patients being involved in research projects related to their own diseases. With the amount of knowledge that’s now only a quick Google search away, I don’t blame researchers for their hands-off opinions when it comes to dealing with patients. However, this type of knowledge has become such an abundant, primary source of hope and inspiration for patients with rare diseases, that even when restricted by paywalls, these patients are often more up to date with the latest breakthroughs and information than their doctors.

    Certainly, entrepreneurial patients like myself have strong opinions. We don’t take no for an answer. We can be instrumental in the process to develop new drugs for our diseases. We can accelerate development times because of our devoted focus. We are the ones who can help translate basic research into real products. Why? Because we have a vested interest in how this all turns out. Our intimate involvement with our diseases gives us the passion and the power to combine our business skills with the scientists’ practical knowledge in a robust collaboration. Biased or not, it doesn’t really matter, the ultimate goal to find a cure is what binds us to our cause.

    In the biotech and pharma industry, translational research is more common in certain parts of the world, like the USA, where companies collaborate at an early stage with academic institutions. With rare diseases like ALS, it is essential to do so. However, there is still much to learn. Academics should share their discoveries with companies and patient groups at a much earlier stage, instead of caring about publication dates. Some breakthroughs take almost a year before becoming public knowledge. That’s another year lost translating them into real products. When the papers are finally published, accompanied by a positive press release, the scientists continue researching in another direction, leaving their discovery for the business world to pursue.

    Innovation, and ultimately curing patients, is halted by this scientific paradigm. This really should change. Scientists should actively engage with fledgling biotech companies and offer them their “off paper” insights in return for a small licensing fee when the efforts prove successful. At the end of the day, it’s all about shared value, shared success and curing patients. At least it should be… Researchers should transform themselves into entrepreneurial scientists, while the business men and women should become more like scientific entrepreneurs.

  • Our progress

    Our progress

    I haven’t been blogging for a while. It hasn’t been due to a lack of inspiration, but it’s been more a matter of finding the time, while trying to balance multiple priorities.

    The last two months have been exciting, but also hectic and exhausting. Where 2013 was a year of planning and making preparations, the time has now come to execute those plans. In January, I got together with fellow patients Robbert Jan en Garmt to discuss our strategy and to clarify the path forward. It turns out that we have 35 projects on our plate! So we have a lot of work to do, but we found time to make a nice picture of us three 🙂

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    Along with former classmates, Garmt recently organized an MBA class with a group of MBA students to discuss our strategy, centered around the following 5 pillars: patients, funds, cause, cure and care. We received a lot of great feedback from a business perspective. On the other end of the spectrum, I collected some very useful scientific feedback while attending the ALS/MND congress last December. We’ve had multiple talks with large biotech investors, health insurance providers, and other influential stakeholders, including visits to research centers in Europe that are focusing on a variety of innovative technologies. We’ve discussed hypotheses with key thought leaders and investigated the overall ALS/MND market worldwide.

    We make every effort to prepare ourselves as thoroughly as possible and do not want our efforts to ever be compromised by a lack of resources. Because of this, we try to have a leader for each project and at least one or more patients involved, as well. We are assisted by numerous experienced, skilled and enthusiastic volunteers. You could say that it’s now full speed ahead!

    In the coming months, I will regularly update you on our progress, so stay tuned…