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TEDMED: 'Patients Like Me' inspired by brother's ALSEngineer Jamie Heywood founded the ALS Therapy Development Institute after his brother Stephen found out he had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. The organization is committed to research on the disease. Because of Stephen's journey as an ALS patient, Jamie became inspired to co-found a website called PatientsLikeMe, a way for people to connect with others who have battled various health conditions. When Heywood gave this talk in 2009, the site had 45,000 patients sharing information about themselves. The site allows instant comparisons of the medications that people are taking for various reasons and the side effects they experience. Data gleaned from patients can be used to help predict outcomes of various treatments - even experimental ones, as Heywood explains in this video. Since this talk, PatientsLikeMe has added an online community for organ transplant recipients as well as one for epilepsy. TEDMED is an annual event that brings together dozens of luminaries from a variety of fields to "demonstrate the intersection and connections between all things medical and health care related: from personal health to public health, devices to design and Hollywood to the hospital." TEDMED 2010 will take place from October 26 to 29 in San Diego, California.
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love. Recent Comments
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They are recent studies linking ALS to previous concussions. Lou Gehrig had 5 in his career. Athletes are affected more than non-athletes. It is probably the worst disease to affect humans and we know almost nothing about it.
My uncle passed away from this horrible disease a few years ago- This is a great thing to have started, and I'm sure it will help the many people struggling to understand and accept their disease, in addition to giving them the support they need in a time of complete loss. Thank you, Jamie.
(@jack3: just a sidenote; my uncle was not an athlete, and to my knowledge never had a concussion)
They think that ALS caused by concussions may be a different type of disease with the same symptoms. They also believe that chemical exposure to fertilizers and pesticides could also cause this illness.
My mother past away from ALS last year and I signed her up for Patients like me when she was still battleing the illness. It was helpful and comforting to know that many others were dealing with the same thing. Hopefully by comparing data we can narrow the speculation around the cause of ALS and discover a cure to this horrible illness.
Want to share with you a web series that i co-created about a friend who is living with ALS. It is a remarkable story filled with love, friendship and community. Please share with outhers. http://oftenawesome.com
Wow, this is an incredibly useful tool. Kudos, to Mr. Jamie Heywood and his team for putting this together. NOW, we need Dr's, scientist and researchers to get on board and implement this tool to see how we can cure these diseases.