Category: ALS

  • Crafting Unique AI Art With Eye-Gaze

    Crafting Unique AI Art With Eye-Gaze

    Greetings! I’m Bernard Muller, an individual whose journey with ALS opened up an unexpected path of expressive creativity. Today, let’s delve into the enchanting world of unique AI art with eye-gaze, where obstacles become the canvas for innovation.

    Unveiling A New Era in Eye-Gaze Art

    In 2010, my world turned upside-down with an ALS diagnosis. But it also led me to an inspiring, unforeseen path of creativity. With the Tobii i-16 eye-gaze computer as my tool, I discovered a ground-breaking mode of communication and self-expression. My eyes, once mere windows to my soul, now have become the ingenious painters of distinctive AI art. The breakthrough of AI truly revolutionised my world , as described in an earlier post.

    The Magical Process: From A Gaze to A Masterpiece

    The creation of art with an eye-gaze involves a delicate symphony between advanced technology and the indomitable human spirit. The process is a partnership between my trusted Tobii i-16 eye-gaze computer and the awe-inspiring Midjourney AI, serving as the canvas for my inventive mind.

    Picture this: I’m sitting in my wheelchair in front of my computer, eyes fixed on the screen, my mind brimming with colorful ideas. As I explore the virtual landscape, my eye movements become a powerful language. The Tobii i-16 deciphers my gaze, transforming it into vibrant commands.

    These ‘prompts’, as they are poetically named, initiate a conversation with Midjourney AI. Responding like a seasoned artist, Midjourney absorbs, interprets, and transmutes these prompts into mesmerizing visuals. The result is an artistic piece, incredibly unique and deeply personal, born from the harmonious fusion of tech prowess and human resilience.

    Midjourney AI: A Pinnacle of Technological Creativity

    Midjourney AI is a captivating application of artificial intelligence in the realm of creativity. Mirroring the likes of OpenAI’s DALL-E and Stable Diffusion, it weaves images from natural language descriptions, or ‘prompts.’ Utilizing a deep neural network, Midjourney AI extracts learnings from an enormous image data pool, and with this, it invents novel images.

    Paired with the Tobii i-16, the Midjourney bot is an integral part of my artistic process. Heeding my gaze, interpreting my prompts, the bot meticulously shapes art that reflects my thoughts and emotions. As I love to express, “When my eyes speak, Midjourney AI listens, and so does art,” culminating in enthralling visual masterpieces.

    My Gallery: A Mosaic of Resilience and Creativity

    My gallery is a tribute to hope, resilience, and unbounded creativity. It harbors the rewards of my artistic journey, encapsulating the story of a brave battle with ALS, transformed into beautiful art. Every piece is a marvel, carrying the touch of my gaze, whispering the sentiments I wish to convey.

    This space serves as a testament to the indomitable human spirit, showcasing that adversity can indeed foster extraordinary creativity. Each piece in the gallery is a beacon of resilience and hope, a testament to the power of my belief, “When eyes speak, art listens.”

    Embarking on the Journey

    I warmly invite you to embark on this remarkable journey with me. It’s an adventure where eye-gaze art weaves tales of resilience, a space where technology and the human spirit engage in a captivating dance. As I’ve always believed, “Someone can and will find a way, why not be that one”

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  • My ALS journey: Living Apart Yet Together.

    My ALS journey: Living Apart Yet Together.

    Living with ALS isn’t just a personal journey. It’s a journey that my loved ones and I travel together, albeit from different vantage points. Today, I’d like to share a glimpse into my life, navigating the bittersweet complexities of distance, love, and resilience.

    I live alone in Holland, but I’m far from alone in spirit. My steadfast companions are my fantastic 24/7 care team, who uphold not just my physical wellbeing but also my emotional strength. Their compassionate support empowers me to lead a life of purpose and creativity, despite my ALS diagnosis.

    Yet, every day, I feel the weight of the geographical distance that separates me from my wife, Antoinette, who lives in Portugal. We had to make this difficult decision as the intensity of care I require escalated. It was not an easy choice, but one borne of necessity and deep love. We wanted to ensure the best care for me and the least emotional burden for her.

    It’s challenging for Antoinette, no doubt. Watching a loved one decline is a deeply emotional journey, one that leaves an imprint on the heart and the soul. The same goes for my two sons, Joost and Emiel, who are based in London. Our bond transcends the physical limitations imposed by ALS, but it doesn’t make it any less difficult to bear witness to my deterioration.

    My sons, much like their father, have embraced the entrepreneurial spirit. They recently launched their company, Greenlights Ventures in London. The pride I feel for their accomplishments is immense. Their drive, their passion, and their courage echo my own sentiments when I embarked on my entrepreneurial path all those years ago.

    As I find new purpose in my life through my AI art, I often reminisce about our shared past. It feels like ages have passed since my diagnosis, and yet, the memories are fresh and vivid. We’ve journeyed together to stunning places around the world, accumulating a treasure trove of shared experiences until my condition made it impossible.

    While it’s crucial to acknowledge my emotions as I navigate this journey with ALS, it’s equally important to acknowledge the emotions of my family. It’s not just about me. It’s about us, each of us carrying our struggles, our fears, our hopes, and our love. And through it all, we are connected, regardless of the distance, the disease, and the challenges.

    The beauty of life is not defined by the absence of adversity, but how we choose to face it. My family and I choose to face it, albeit separated in distance, together – with courage, with love, and with resilience.

  • 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”

  • Beyond the Ice Bucket

    Beyond the Ice Bucket

    congress-blog

    Five years ago, I was unexpectedly struck by amyotrophic lateral sclerosis, or ALS. I have dedicated my life to moving mountains in what was, at first, an unfamiliar field. My entrepreneurial career included real estate, flowers, oil and shipping. But the past five years had challenged me with the steepest learning curve I’ve ever faced: my disease.

    During my crash course on ALS, often called Lou Gehrig’s disease, I noticed that regulatory review and approval seriously hindered the process of drug development and results in missed deadlines.

    Although I am an academic drop out, I’ve learned to appreciate science as the backbone of evidence-based theories. However, being a patient with a killer disease means never ruling out miracles – the desire for a cure drives everything I’ve come to appreciate the passion and compassion of people within the ALS community – the patients, researchers and companies that underpin that drive.

    I’ve also learned to apply the skills I developed in my previous careers to drive innovation in drug development. This has led to the development of what is currently one of the largest genetic datasets of ALS patients on the globe. The shift in focus from technology-driven to disease-driven drug development is necessary in an industry ruled by science but governed by non-disclosure agreements. The heart of next generation drug development lies here – with innovative research approaches that include the experiences of the patients that the industry is focused on helping.

    Today, real innovation increasingly comes as a result of patients’ involvement in drug development. Admittedly, most pharma and biotech companies have patient-centric advocacy embedded in their strategy and mission statements, but patients have traditionally formed just a small part of the drug development equation. The patient voice should echo in all parts of the development path, including governing bodies, ethical committees and expert panels. I’d go as far to say that if that was done 50 years ago, we probably would not have been able to increase fivefold the time it takes for a drug to come to market. Fortunately, this is starting to change.

    Patients are increasingly aware of their ability to play a significant role in the biotech R&D paradigm. Social phenomena like the Ice Bucket Challenge and increased patient involvement to accelerate drug approvals have served as good examples for both the industry and the patient community. We should not omit science and data from advocacy campaigns. R&D should remain a scientific process, not one driven solely by popular vote. However, placing patients at the center of the drug development process can help spur changes and direct attention to unmet medical needs.

    Industry and government also have responsibility to recognize this shift. Pending U.S. legislation like 21st Century Cures Initiative and industrywide conferences such as the BIO International Convention provide opportunities for patients to make themselves heard, and for stakeholders to recognize these new roles.

    I founded a biotech company that aims to address a deadly disease with innovative, transparent research, genetic data analysis and accelerated therapy development. Our for-profit status allows us to apply general business rules to attract capital and advance our mission. We still face the boundaries obstructing fast development tracks, but this generation of patients, “patients 3.0,” will eventually break down traditional boundaries and help streamline and expedite drug development. With more than 5,600 people diagnosed with ALS each year, the sooner, the better.

    Bernard Muller

    This blog was published as the Congress Blog on The Hill on June 10th 2015

  • Sterke Leeuw

    Sterke Leeuw

    sterke leeuw
    Richard Branson’s “screw it, let’s do it” is typerend voor ondernemerschap, gewoon doen en de onmogelijkheden oplossen wanneer ze zich voordoen. Ikzelf zeg altijd dat ondernemen draait om 3 dingen; mensen, geld en omstandigheden. En het is vooral het laatste dat bepaalt of je succes hebt. Je aanpassen aan de altijd weer veranderende omgeving, niet alleen zakelijk, maar ook in je privéleven.De manier waarop ik omga met het feit dat ik ALS heb, wordt gekenmerkt door aanpassingen en dus vooral mij te focussen op de dingen die ik nog wel kan. Dat lijkt eenvoudig gezegd, maar dat is het natuurlijk niet. De ziekte heeft voor iedereen een andere beleving, voor de één een kwelling, voor sommigen ook een openbaring, een zinbeleving, van waar draait het eigenlijk om in het leven. Die relativering kom ik bij heel veel mede patiënten tegen en verklaart ook die enorme saamhorigheid tijdens evenementen voor ALS.Mijn hele leven draait om mogelijkheden, ook wanneer onmogelijkheden aan de horizon ontstaan, probeer ik het negatieve om te buigen in het positieve, vaak daarbij denkend dat het leven maakbaar is. Maar ik ben ook een realist, wetend dat er zoiets als het lot bestaat. En als dan de koers van je leven een andere wending neemt, kan je maar beter je kompas pakken om in ieder geval bij te sturen.

    Ik ben niet godsdienstig, maar geloof sterk in de evolutieleer van Darwin, die zegt: “Het zijn noch de sterkste, noch de meest intelligente die overleven, maar degene die zich het beste aanpassen” en zo is het in mijn ogen.

    Toch kent iedereen die angst en dat soms hulpeloze gevoel van die volgende dag, die siddering die je voelt als iets simpels je niet meer lukt, overslaand in woede en frustratie. Het omarmen van die angsten, dat gevoel accepteren is een overwinning op jezelf…!

    In de top 5 van grootste angsten in Nederland staan; de dood en spreken in het openbaar, nou beide heb ik inmiddels wel overwonnen en daarbij ben ik trots op mezelf. Die trots wil ik graag breken in 1500 stukjes en geven aan al mijn mede patiënten, want ik weet dat niet iedereen even sterk kan en wil zijn. Toch schuilt in deze gastblog ook weer een diepere betekenis omdat LeoForte staat voor “sterke leeuw” en laat dat nu precies mijn sterrenbeeld zijn en figuurlijk betekent het een zeer zware beproeving ondergaan, nou dat noem ik dan in ons geval een understatement…

    Maar laten we vooral vechten als leeuwen en de omstandigheden aangrijpen om het onmogelijke, mogelijk te maken…

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    Deze gastblog is geschreven voor mijn mede patient Ries van der Velden en
    zijn stichting Leoforte. Kijk voor meer info op http://www.stichtingleoforte.nl