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Discovering Solutions, Fostering Optimism

Discovering Solutions, Fostering Optimism

April 10, 2025
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Discovering Solutions, Fostering Optimism

As a Googler, I'm surrounded by cutting-edge tech every day. But I never thought I'd use this technology to help save my son Max's life, and others like him. In 2023, Max was diagnosed with Alexander disease (AxD), a rare and fatal neurodegenerative condition. It turned our world upside down. We were told there was no treatment or cure, and while the exact progression was uncertain, the outcome was clear. Suddenly, we were thrown into a world of complex medical jargon. Like many parents facing this, I just wanted to understand what was happening to Max, the science behind AxD, and what we could do about it. The science seemed out of reach. Research papers were packed with terms I didn't get. I felt lost, overwhelmed, and desperate for some clarity. That's when Gemini stepped in as my ally. It let me say, "Explain this so someone with high school biology knowledge could understand." Because that's where I was at. [ttpp]I used Gemini's PDF upload feature to get summaries of complex research papers.[yyxx] I could feed Gemini these dense research papers, genetic explanations, and medical articles, and it would break them down into something I could grasp. It was like having a personal science tutor, available whenever I needed it. Even Dr. Albee Messing, the kindest and most patient Alexander disease scientist at the Waisman Center, University of Wisconsin-Madison, couldn't answer all my questions or catch me up on neurobiology. But Gemini helped me not only with the terminology but also with the concepts behind it. This new understanding was transformative. It wasn't just about absorbing information anymore; it was about connecting the dots. With Gemini's help, I started seeing how different research areas could relate to Alexander disease. For example, if there's a paper on a cell therapy that addresses "senescence," or aging, and another on "senescence in AxD," could they be connected? With a clearer understanding of the science, I could ask researchers more specific questions. So, I emailed them. Amazingly, scientists responded. What started with a few emails and calls grew into world-class scientists, who had never heard of Alexander disease, applying their expertise in new ways that might lead to treatments. Now, 11 research groups (professors or their labs) have either done or are doing work on AxD that they hadn't before. [ttpp]Dr. Amy Waldman of Children's Hospital of Philadelphia is one of the foremost Alexander disease doctors in the country. She is working to bring new clinical treatments to AxD patients like Max. Professor Corina Amor's main focus is on aging and senescence at Cold Spring Harbor Laboratory. She was one of the first researchers I connected with. At Duke, Pranam Chatterjee, Assistant Professor of Biomechanical Engineering, is using AI to help develop peptide-guided protein therapeutics for AxD.[yyxx] I'm no doctor or biologist, but I'm honored to now serve on the board of End AxD, join scientific conferences, and raise funds to enable scientific testing of promising research on AxD. Me—a dad who just wanted to understand what was happening to his child. Our family's journey with AxD has been tough, but it's also been a journey of hope. I turned to technology and found a bridge to connect with the scientific community, a group of people I will forever be grateful for and in awe of. Beyond everyday uses, AI has the potential to revolutionize medicine, genetics, biology, and drug discovery. Google DeepMind's AlphaFold, created in partnership with Isomorphic Labs, could help scientists develop new drugs and treatments by understanding and predicting how proteins fold. Isomorphic Labs is pushing forward into new therapeutic research by developing cutting-edge computational and AI methods to accelerate the drug discovery process, which could lead to biomedical breakthroughs and treatments for devastating diseases. Google recently introduced an AI co-scientist to help accelerate scientific discoveries and find cures, including for rare diseases like AxD. These tools will allow scientists to make faster breakthroughs, especially for the thousands of rare diseases that often receive limited attention and funding. I'm grateful for the many scientists working to help families like mine and glad that Gemini empowered me to play a productive role in advancing research. I hope it can do the same for more people. To support breakthrough research on treatments of Alexander disease, visit EndAxD.org. Find out more about Leukodystrophies, the group of diseases that Alexander disease belongs to, at ULF.org. Find out more about the science of Alexander disease at the Waisman Center's Alexander Disease Lab. Acknowledgments: A special thanks to: Dr. Amy Waldman, Neurologist at Children's Hospital of Philadelphia, Dr. Corina Amor, Ph.D., Assistant Professor at Cold Spring Harbor Laboratory and the Amor Lab team, Pranam Chatterjee, Ph.D., Assistant Professor of Biomedical Engineering at Duke University, Albee Messing, V.M.D., Ph.D., Professor Emeritus of Neuropathology in the Department of Comparative Biosciences, and all the doctors, scientists, and researchers working tirelessly to find a cure. [ttpp]Max and his son wearing matching green sweatshirts, smiling at the camera while holding their arms.[yyxx]
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Comments (50)
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WillBaker
WillBaker April 20, 2025 at 7:54:07 AM EDT

이 앱 덕분에 정말 큰 도움이 되었어요! 알렉산더 병과 싸우는 동안 해결책을 찾고 낙관적인 마음을 유지하는 것이 어려웠지만, 이 앱이 정말 큰 도움이 되었어요. 어두운 시기를 안내해주는 것 같아요. 다만 AxD에 대한 자원이 더 많았으면 좋겠어요. 좋은 일 계속하세요! 🙏

AlbertWalker
AlbertWalker April 20, 2025 at 6:40:10 AM EDT

Esse aplicativo realmente tocou meu coração! Usar tecnologia para salvar vidas é incrível, especialmente para doenças raras como a de Alexander. A história do Max é inspiradora, mas também nos lembra de quanto ainda precisamos fazer. Continue desafiando os limites! 🚀

StephenGreen
StephenGreen April 17, 2025 at 6:28:46 AM EDT

このアプリは本当に助けになりました!マックスの闘病中に解決策を見つけて楽観的になるのは難しかったですが、このアプリが本当に助けてくれました。暗闇の中を導いてくれるようなものです。ただ、AxDに関するリソースがもっと欲しかったです。素晴らしい仕事を続けてください!🙏

AlbertRodriguez
AlbertRodriguez April 16, 2025 at 4:47:28 PM EDT

Como pai, a história de usar tecnologia para lutar contra a doença de Alexander é inspiradora e ao mesmo tempo comovente. É incrível como a tecnologia pode oferecer esperança onde não havia. Continuem desafiando os limites, Googlers! 💪

BrianThomas
BrianThomas April 16, 2025 at 4:56:51 AM EDT

Este aplicativo foi um salva-vidas para nós! Encontrar soluções e manter o otimismo durante a luta do Max com a doença de Alexander foi difícil, mas este app realmente ajuda. É como ter um guia pessoal nos momentos mais sombrios. Só desejava que tivesse mais recursos sobre AxD. Continuem o bom trabalho! 🙏

AvaHill
AvaHill April 16, 2025 at 4:18:28 AM EDT

Como padre, la historia de usar tecnología para luchar contra la enfermedad de Alexander es inspiradora y desgarradora a la vez. Es increíble cómo la tecnología puede ofrecer esperanza donde no la había. ¡Sigan empujando los límites, Googlers! 💪

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